Protecting Seniors From Alzheimer’s Cure Scams

The following is a reprint, for the reader's convenience, of an article published in  Today's Caregiver.  I thought it a timely topic since there is recent discussion of possible approval of a treatment for Alzheimer's disease, which will be addressed in a future blog post:  

Alzheimer’s disease is the health condition that many fear the most. That concern can prompt us to eat well, exercise, get regular health checkups and follow our doctors’ recommendations. However, for some older adults, the fear of the disease leads to wasting money on Alzheimer’s cure scams that at best do nothing and at worst may cause harm.

Alzheimer’s Cure Scams 

Alzheimer’s disease is the health condition that many fear the most. That concern can prompt us to eat well, exercise, get regular health checkups and follow our doctors’ recommendations. However, for some older adults, the fear of the disease leads to wasting money on Alzheimer’s cure scams that at best do nothing and at worst may cause harm.

Alzheimer's and dementia treatment scams are big business. Some manufacturers know that seniors fear Alzheimer’s and have money to spend. Seniors are also uniquely vulnerable to scams. As we age, our brains can change in ways that make us less aware when something important is happening nearby and reduce our ability to read social cues. Researchers say those brain changes can make us more vulnerable to scammers.

The good news is that the FDA is cracking down on companies that prey on people’s desperation for an Alzheimer’s cure. Earlier this year, the agency acted against makers of 58 products that claimed to treat the disease but didn’t have FDA approval or proof that they worked.

The bad news is there are still unproven products out there being sold to seniors and their family members who are desperate for some sense of hope. The FDA says in some cases, they can interact with prescription medications and harm the people who take them.

How to Protect Your Parents From Alzheimer’s Cure Scams

How can you tell if an Alzheimer’s treatment or dementia supplement is worthwhile? Here’s a checklist based on tips from the Alzheimer’s Association and the FDA.

• Does the product appear on the FDA’s Flickr account? The agency has a photo stream of products that have made unproven Alzheimer’s claims. The photos include close-ups of the products’ labels and packaging.
• Does the product claim to cure Alzheimer’s or dementia? Again, the FDA notes that there is no cure for Alzheimer’s.
• Does the product claim to reverse dementia symptoms? The FDA says there’s no product or FDA-approved treatment that can stop or reverse Alzheimer’s symptoms.
• Does the product say it can reduce the risk of Alzheimer’s by a specific amount? The FDA says there’s no proof to back up such claims.
• Some products are marketed with vague language that is misleading, scientists say. Look for these types of statements:
• Does the product claim to be a “scientific breakthrough?” That’s a general term that doesn’t necessarily mean anything.
• Does the product claim to help with lots of illnesses, not only Alzheimer’s? The FDA says you should “steer clear” of products that made broad, vague health claims.
• Does the product mention results in the lab or in animals? Those results don’t prove the treatment will help people.
• Does the product say it “may” help with Alzheimer’s disease or dementia? That means the product may or may not, and your parents may be better off saving their money.

Finally, remember that dietary supplements marketed to Alzheimer’s patients may seem legitimate because they’re available at the drugstore, but the evidence may not support dementia claims. Check the Alzheimer’s Association list of commonly recommended supplements like Omega-3 fatty acids and Ginkgo biloba to learn what they can and can’t do.

If you go through the checklist and you’re still not sure if a product is legitimate, ask their doctor. Your parent’s doctor knows which treatments and over-the-counter supplements may be helpful for your parent’s overall health. They also know which might interfere with their medications and which would be a waste of money.

Other Ways to Combat Alzheimer’s Scams

If you think your parent participated in any Alzheimer’s scams or if you suspect a product is a scam, you can report it to the FDA. Use the online form for reporting unlawful sales of medical products on the internet. You can also file a complaint with the attorney general in the state where your parents live. If your parents have taken a supplement that harmed them, you can report it to the Department of Health and Human Services. Of course, encourage your parent to talk about it with their doctor.

As with all issues concerning a senior for whom you are a caregiver, communication, and reinforcement of the message is important. My wife and I would find alternate ways of communicating a message, such as telling the senior a cautionary tale about another senior.  Being creative makes directed conversations more natural (less "preachy") and reinforces a message without emcouraging resistance.     

 

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.