Alzheimer’s disease is a national crisis. While there is currently no cure for the fatal disease that affects over 6.7 million Americans, treatments are being discovered to change the disease progression and offer more time to families.

In June 2021, Lecanemab received accelerated approval as a treatment for Alzheimer’s disease from the U.S. Food and Drug Administration (FDA). This was the first therapy that actually targeted one of the disease hallmarks instead of simply treating the symptoms, demonstrating that removing beta-amyloid from the brain reduces cognitive and functional decline in people living with early-stage Alzheimer’s.

Since then, additional anti-amyloid treatments have shown positive results to slow down the disease progression. Lecanemab received accelerated FDA approval in January this year, and last month.

While these treatments have shown a glimmer of hope for the future of Alzheimer’s, that hope was severely diminished by an unfortunate reality: lack of access.

In April 2022, the Centers for Medicare & Medicaid Services (CMS) issued an unprecedented decision to block Medicare coverage of all FDA-approved treatments that target amyloid for Alzheimer’s disease, severely limiting access by forcing people to join a clinical trial or pay out-of-pocket at the high cost of over $26,000-$28,000 per year.

Fourteen months later, after continuous efforts from the Alzheimer’s Association and advocates nationwide to change this decision, CMS announced on June 1, 2023 that it will cover Alzheimer’s treatments that receive traditional FDA-approval if physicians register and enter data in a registry.
“While registries are important, posing this condition of coverage on people living with early-stage Alzheimer’s still creates an additional and unnecessary barrier,” said Meg Barron, Alzheimer’s Association Region 3 Leader and Executive Director of the California Southland Chapter. “These families don’t have time to wait for a registry or search for a doctor who participates in one.”

Setting this requirement for registries is yet another unprecedented decision made by CMS towards this class of FDA-approved drugs.

Each day, the Alzheimer’s Association estimates that 2,000 people living with early-stage Alzheimer’s progress beyond the point where current treatments can help them.
On June 20, Alzheimer’s advocates from Ventura County and Southern California met in Los Angeles to rally at the Wilshire Federal Building, urging CMS to change its policy and expand access to FDA-approved Alzheimer’s treatments.

To get involved as an advocate or learn more about Alzheimer’s treatments and free support services, visit the Alzheimer’s Association online at alz.org/cacentral. Their Ventura office is located at 2580 E Main Street #201, and their 24/7 Helpline is 800.272.3900 for around-the-clock support and information in English and Spanish.

To diagnose dementia, a doctor will complete a medical history, physical exam, and neurological tests that assess balance, sensory response, reflexes, and memory and thinking skills. In addition, a doctor may order brain scans, blood tests, genetic tests, a spinal tap, and a mental health evaluation to help determine a diagnosis.

Because different types of dementia can share similar symptoms, providing an accurate diagnosis can be difficult. In addition, dementia may be difficult to diagnose as a single disease given that a person could have more than one type.

Visiting a primary care doctor is often the first step for people who are experiencing symptoms of dementia. Your doctor may refer you to a neurologist, which is a specialist in disorders of the brain and nervous system. Neurologists generally have the expertise needed to diagnose dementia.

While there is currently no cure for Alzheimer’s or related dementias, medicines are emerging to treat disease progression. There are also medications that may temporarily improve or stabilize memory and thinking skills in some people and may help manage certain symptoms and behavioral problems. A team of specialists — doctors, nurses, and therapists — can help with maintaining mobility; addressing speech and swallowing problems; and learning new ways to handle loss of skills with everyday tasks, such as feeding oneself.

Through substantial investments from the U.S. federal government and others, researchers continue to advance scientific growth and discovery to improve the diagnosis, treatment, and care of those living with dementia.

If you are concerned about memory problems or other symptoms of dementia, call your doctor. If you or someone you know has recently been diagnosed, explore the resources on this website and referenced below to find out more about dementia care, support, and research. It is important to educate family, friends, and caregivers about a loved one’s diagnosis. In-person and online support groups offered by nonprofit organizations can provide families and caregivers with additional resources and opportunities to share experiences and express concerns. You may also consider participating in a clinical trial or study.

People whose brains have less myelin — the fatty tissue that insulates nerve cells — experience steeper declines in cognition over time, according to an NIA study published in Alzheimer’s & Dementia. The findings show the impact of myelin content as healthy people age and underscore myelin as a potential therapeutic target for neurodegenerative diseases, such as Alzheimer’s and mild cognitive impairment.

Myelin is an insulating layer that forms around nerves, including those in the brain. It helps neurons communicate more efficiently, maintain a healthy water balance, and respond to signals involved in memory formation and other cognitive functions. Previous studies have shown that myelin production slows as people age, but whether changes in myelin are linked to age-related changes in cognition remained unknown. However, some animal study evidence suggests changes in myelin may be responsible for cognitive deficits in neurodegenerative diseases.

For this study, the team of NIA scientists gathered data from 123 cognitively unimpaired adults enrolled in the Baltimore Longitudinal Study of Aging and from the Genetic and Epigenetic Signatures of Translational Aging Laboratory Testing study. The researchers tested several different types of cognition and used magnetic resonance imaging (MRI) brain scans to measure myelin content in the brain. They looked at two different MRI-based measurements to estimate the amount of myelin: myelin water fraction (MWF) and longitudinal relaxation rate (R1).

For both measurements, lower myelin was linked to greater cognitive decline over time. Lower myelin, as measured with MWF, was associated with a steeper decline in executive function, which includes skills such as planning, problem-solving, organization, and multitasking. Lower myelin as measured with R1 was associated with a faster decline in verbal fluency, which measures the ability to retrieve information from memory. These findings contribute to a foundation for further studies that explore how age-related changes in myelin are different in people who develop neurodegenerative diseases.

While, overall, this study establishes a meaningful relationship between myelin content and cognition, the authors noted some limitations, mainly that the cohort size was relatively small and included a higher proportion of men and White participants. Future research should reexamine the link in a larger, more diverse study cohort; explore the link between myelin and cognition in people with neurodegenerative diseases; and test whether promoting myelin production could be an effective strategy to prevent disease.

Some viral illnesses may increase a person’s chances of later developing Alzheimer’s disease or another neurodegenerative disorder. Though a causal link cannot be confirmed, an NIH study in which researchers mined the medical records of hundreds of thousands of people in Finland and the United Kingdom found significant associations.

NIH scientists used biobank data to estimate the chances that some viral infections, including influenzas (see picture), may lead to a neurodegenerative disorder diagnosis. Credit NIAID/NIH.

As published in Neuron, the researchers found there may be at least 22 pairings between a neurodegenerative disorder diagnosis and a previous viral infection that led to a hospital visit. The strongest risk association was between viral encephalitis — an inflammation of the brain caused by a virus — and Alzheimer’s disease. Meanwhile, hospitalizations due to pneumonia-causing flu viruses were linked to the diagnoses of several disorders, including dementia, Parkinson’s disease, and amyotrophic lateral sclerosis (ALS). The study results also raised the possibility that existing vaccinations may help some people reduce the chances of experiencing these disorders.

Neurodegenerative disorders damage different parts of the nervous system. Typically, this happens later in life and produces a variety of problems, including with thinking, remembering, and moving. Several previous studies have suggested that certain viruses may play a role in each of these disorders. For example, a 1991 study of autopsied brain tissue suggested there may be link between herpes simplex virus and Alzheimer’s disease. More recently, scientists found evidence for a link between the Epstein Barr virus and multiple sclerosis by analyzing patient blood samples and medical records. The latter study sparked the CARD team to conduct this new study.

“After reading the Epstein Barr virus study we realized that for years scientists had been searching, one-by-one, for links between an individual neurodegenerative disorder and a specific virus,” said Michael Nalls, Ph.D., leader of the NIH CARD Advanced Analytics Expert Group and study senior author.

Led by Kristin S. Levine, M.S. and Hampton L. Leonard, M.S., two NIH CARD data scientists, the researchers mined the medical records of 300,000 individuals stored in FinnGen, a nationwide Finnish biobank. Specifically, they searched for individuals who had one of six neurodegenerative disorder diagnoses: Alzheimer’s disease, ALS, generalized dementia, multiple sclerosis, Parkinson’s disease, or vascular dementia; and then checked to see if a viral infection caused those individuals to make a prior visit to the hospital. Hospitalizations due to COVID-19 were not included in the study.

Initially, they found 45 significant associations between a neurodegenerative disease diagnosis and a previous viral infection. That number narrowed to 22 associations after the scientists performed a second search of UKBiobank, which contains the records of 500,000 individuals from the United Kingdom.

Of all the neurodegenerative disorders, generalized dementia had the most associations, with links to six different virus exposures. These exposures were categorized as viral encephalitis, viral warts, other viral diseases, all influenza, influenza and pneumonia, and viral pneumonia. Individuals who had viral encephalitis were at least 20 times more likely to be diagnosed with Alzheimer’s than those who did not experience that virus.

Severe cases of influenza were linked to the widest range of risks. Influenza and pneumonia exposures were associated with all the neurodegenerative disorder diagnoses except multiple sclerosis.

This study was funded by the Intramural Research Program at NIA (ZIAAG000535).

by Patricia Schallert

I met Robert Warnagieris, Ed.D at the Ventura Retired Men’s Group. This is what he has to say about his life as a retired senior.

“I was born in Chicago but came to California at the age of 6 months.  Therefore, I am a California product who grew up on the West Coast and received early schooling in San Luis Obispo County.  I ended up in Ventura in 1970 because I like what the VC county seat of Ventura had to offer in terms of cultural, educational, youth/senior programs, medical facilities, shopping and climate opportunities for me and my family. I had put in 38 ½ years in with the US Navy as a civilian and was able to retire with 40 years of credit.  It was time for me to move on. I am happy being retired from full time employment, but I really didn’t retire from an active life, I just don’t get paid.  I have been retired for 28 years.”

“I have more time to pursue time with my wife, hobbies, home maintenance/landscaping and community activities. I don’t have to meet any special schedule nor travel for business purposes.  I am free to stay home and scratch the dog’s ears if I please. I can do most anything I desire, and I do.  I am a versatile person and often say I have expertise in many fields but master of none.  I have been able to use all my experience, knowledge, and skills in many different venues.”

“When I retired, I expected to be able to switch from government service to an educational teaching or leadership position easily.  It was not so easy; however, I was able to continue my graduate level teaching on a part-time basis.”

“There were unexpected changes in my marital status and the eventual stability I achieved in that regard. As an 88-year-old retired person I spend time taking care of my wife and myself, pursuing physical fitness, hunting, fishing, golfing, community activities, various forms of entertainment, gardening/landscaping, watercolor painting, writing, time with my family, visiting friends, reading, walking the dog daily, cooking, maintaining my home, financial activities, and, of course, visits with multiple doctors.  Since the pandemic and aging, my long-distance traveling has been limited.  I tend to be an extreme do-it-yourselfer.”

“My parents encouraged me to graduate from high school in 3 years and then enroll for college.  I graduated at the age of 17 and enrolled in an engineering major at Cal Poly (SLO).  The continued pursuance of education to advance in many fields has been a major factor in my life.”

“In my 20’s I didn’t realize what I could achieve with perseverance.  I’m no genius but I set goals and achieved them. I wrote an Ethical Will for my family and listed 48 values that guide my life, ranging from education to having a dog.  They are in no particular order, however, high on the list are family matters, education, physical fitness, citizenship, career, professionalism, integrity, long term friends, and spiritual matters.”

Editor: If you are a senior (over 70-years please), or know of one, who would like to share their retirement, or job, with us please let us know at [email protected].

by NIH

Doctors may ask questions about health, conduct cognitive tests, and carry out standard medical tests to determine whether to diagnose a person with Alzheimer’s disease. If a doctor thinks a person may have Alzheimer’s, they may refer the person to a specialist, such as a neurologist, for further assessment. Specialists may conduct additional tests, such as brain scans or lab tests of spinal fluid, to help make a diagnosis. These tests measure signs of the disease, such as changes in brain size or levels of certain proteins.

There is currently no cure for Alzheimer’s, though there are several medicines approved by the U.S. Food and Drug Administration (FDA) that can help manage some symptoms of the disease along with coping strategies to manage behavioral symptoms. In 2021, FDA provided accelerated approval for a new medication, aducanumab, that targets the protein beta-amyloid, which accumulates abnormally in the brains of people with Alzheimer’s. The new medication helps to reduce amyloid deposits but has not yet been shown to affect clinical symptoms or outcomes, such as progression of cognitive decline or dementia.

Most medicines work best for people in the early or middle stages of Alzheimer’s. Researchers are exploring other drug therapies and nondrug interventions to delay or prevent the disease as well as treat its symptoms.

Alzheimer’s disease slowly gets worse over time. People with this disease progress at different rates and in several stages. Symptoms may get worse and then improve, but until an effective treatment for the disease itself is found, the person’s ability will continue to decline over the course of the disease.

Early-stage Alzheimer’s is when a person begins to experience memory loss and other cognitive difficulties, though the symptoms appear gradual to the person and their family. Alzheimer’s disease is often diagnosed at this stage.

During middle-stage Alzheimer’s, damage occurs in areas of the brain that control language, reasoning, sensory processing, and conscious thought. People at this stage may have more confusion and trouble recognizing family and friends.

In late-stage Alzheimer’s, a person cannot communicate, is completely dependent on others for care, and may be in bed most or all the time as the body shuts down.

How long a person can live with Alzheimer’s disease varies. A person may live as few as three or four years if he or she is older than 80 when diagnosed, to as long as 10 or more years if the person is younger. Older adults with Alzheimer’s disease need to know their end-of-life care options and express their wishes to caregivers as early as possible after a diagnosis, before their thinking and speaking abilities fail.

Mild cognitive impairment, or MCI, is a condition in which people have more memory problems than normal for their age but are still able to carry out their normal daily activities. A doctor can do thinking, memory, and language tests to see if a person has MCI. People with MCI are at a greater risk for developing Alzheimer’s disease, so it’s important to see a doctor or specialist regularly if you have this condition.

If you are concerned about memory problems or other symptoms, call your doctor. If you or someone you know has recently been diagnosed, explore the resources on this website and linked below to find out more about the disease, care, support, and research.

For over 700,000 people in California living with Alzheimer’s disease, wandering is a very common symptom that can be dangerous — even life-threatening — and the stress of this risk weighs heavily on caregivers and family.

It is estimated that 60% of people with dementia will wander and become lost at some point, and many do so repeatedly. If not found within 24 hours, up to half of wandering individuals will suffer serious injury or death.

There are several warning signs that lead to wandering, including forgetting how to get to familiar places or talking about fulfilling former obligations, such as going to work and wanting to ‘go home’ even when at home.

“Individuals who wander often have a specific intention,” said Kathryn Westland, Director of Programs for the Alzheimer’s Association California Central Coast Chapter. “They may have a personal need such as going to the bathroom. But if they become disoriented, even in a familiar place, this simple task can become a challenge and may prompt them to leave the house.”

While preventative measures cannot guarantee that a person living with dementia won’t wander, there are certain tips to help reduce the risk of wandering.

Identify the time of day the person is most likely to wander. Plan things to do during this time, including exercise, to help reduce anxiety and restlessness.

Ensure all basic needs are met, including toileting, nutrition and hydration.

Create a daily plan and involve the person in daily activities and chores.

Consider using a GPS device, a tracking app or other technology if the person is still safely driving,or remove access to any car keys if the person is no longer driving.

Avoid busy places like shopping malls and other busy areas, which can be confusing and cause disorientation.

Assess the person’s response to new surroundings and do not leave them, providing reassurance if they feel lost or abandoned.

If a family member does wander and get lost, begin your search immediately. Start by searching the immediate vicinity, including “less-traveled” areas in your home. Outside the home, search the yard and nearby surroundings. Most wanderers are found within a half mile of their homes or starting location.

If, after 15 minutes, the person is not located, call 911 to file a missing person’s report. California has implemented a Silver Alert, which is activated when an elderly, developmentally, or cognitively-impaired person has gone missing and is determined to be at-risk.

For more information and free support services, visit the Alzheimer’s Association online at alz.org/cacentral. Their Ventura office is located at 2580 E Main Street #201, and their 24/7 Helpline is 800.272.3900 for around-the-clock support and information in English and Spanish.