‘A New Era of Care’ – County residents attend national Alzheimer’s conference
Every year, the Alzheimer's Association invites advocates to come to Washington DC to learn, support one another, reward leaders who work to find cures for Alzheimer's and other dementias, and finally, to go to Capitol Hill for "Hill Day-" where …
Every year, the Alzheimer's Association invites advocates to come to Washington DC to learn, support one another, reward leaders who work to find cures for Alzheimer's and other dementias, and finally, to go to Capitol Hill for "Hill Day-" where advocates ask their Congresspeople to support continuing and new Alzheimer's legislation.
Along with long-time Alzheimer's Association advocate Elizabeth Santos, I attended this year's annual Alzheimer's Impact Movement Advocacy Forum as a resident of Mendocino County, a board member of Hospice of Ukiah and a constituent of Congressman Jared Huffman's Congressional District 2. I also visited the offices of Congressman Mike Thompson and Senator Alex Padilla.
L to R: Elizabeth Santos, Ukiah, Laureen Vreeland, Solano County, Carole Brodsky, Ukiah, Crozer Connor, representative for Congressman Mike Thompson, Paulette Litz, Napa County and David Efros, Sonoma County take a photo after a meeting with Congressman Mike Thompson's (D, St. Helena) staffer Connor. The advocates requested Thompson's support for 4 pieces of legislation which would provide continuing support for Alzheimer's research, training for physicians and increased funding. Santos and Brodsky were representing Mendocino County as advocates and caregivers, with Brodsky also representing Hospice of Ukiah as a board member.
Since writing my very first story for the Ukiah Daily Journal in 2008 until her death in 2017, I cared for my mother, May Brodsky, who was diagnosed with dementia in 2005. Without Elizabeth's expertise and support, along with Ukiah Senior Center's Lunch Bunch program and the nurses, CNA's and staff of Hospice of Ukiah, I couldn't have continued to work and provide round-the-clock care for my mother. Being an advocate for the Alzheimer's Association helps me to give back and share the latest research and activities of the world's largest Alzheimer's organization with UDJ readers.
Employing over 1,700 people nationwide, the organization's Walk to End Alzheimer's is the second-largest peer-to-peer fundraising event in the country. The Alzheimer's Association has invested over $400 million to assist with funding over 2,600 scientific investigations. Over 1,000 advocates like myself, which included caregivers, medical professionals and people living with Alzheimer's and other dementias attended this year's forum.
Elizabeth Santos has been a care home operator and a long-time advocate for county residents with Alzheimer's and other Dementias. This marks Santos's 7th time attending the Forum.
Day One consisted of a visit to the event by Senator Susan Collins, who along with Senator Amy Klobuchar were the recipients of 2023's Alzheimer's Humanitarian of the Year Award. Senator Collins was honored in large part for her authoring and helping pass the most impactful Alzheimer's legislation in history.
"When I first joined the Senate in 1997, there really was not a focus on Alzheimer's Disease. It was called senility. It was not thought of a disease, but just a natural part of growing old, which it is not," she told the attendees. She cited the first Alzheimer's bill that she co-authored in 2011, which led to the creation of a national plan that set a goal of prevention and treatment of the disease in 2025, a goal which has not been achieved.
"It was important to set an ambitious objective because that spurred the research. We've made progress toward finding a treatment and a means of prevention." Reauthorization of this legislation, set to expire soon, was one of the priorities for the advocates to bring to Congress on Hill Day. "We've increased related research from $500 million in 2013 to a record high- $3.7 billion last year," Senator Collins told the group- laying that success at the feet of the advocates in the room and adding that 1/3 of this year's increased NIH budget is dedicated specifically to Alzheimer's research.
"Increasing access to FDA treatment for Alzheimer's is still top of mind for many of us today," said Collins, recalling her anger during last year's hard-won battle to get an FDA-approved Alzheimer's medication added to the Center for Medicare and Medicaid's formulary list. "Despite the equivocal evidence confirmed by the scientific community- despite the approval by the FDA, CMS issued an unprecedented coverage policy that restricts coverage of Alzheimer's treatments. This makes no sense at all. It is FDA's job to approve drugs, and CMS should stay in its lane." She led a 20-senator bipartisan campaign with senators asking for reconsideration of the restrictive coverage requirement that called for participation in clinical trials, which particularly harmed patients in rural states. Between bipartisan support and the vocal outcry from the Alzheimer's community, the requirement for clinical trial enrollment was lifted by CMS.
Amyloid Plaques. Tau Proteins. Tangles. Lifestyle. Alzheimer's research is beginning to translate into new treatments, tests and greater understanding of what is ironically one of the least understood parts of human beings- the brain. The disease bearing the name of its discoverer- Dr. Alois Alzheimer- was first discovered in his patient in 1906. It wasn't until 1987 that the first clinical drug trial took place, and it took another 15 years for research to optimize the Pittsburgh Compound- which helped to show beta-amyloid in the living brain.
"Dementia" is a collection of syndromes related to cognitive decline, which can include a cluster of cognitive, behavioral and psychological symptoms. "Alzheimer's" is the most common cause, but it's not unusual to have "mixed dementia." The challenges for rural residents with Alzheimer's is twofold- first, receiving an accurate- and even more importantly- an early diagnosis- which for local folks entails travelling to San Francisco or UC Davis. The second part of the challenge is locating optimal care from one's local family physician- many of whom have had little or no recent training in today's Alzheimer's therapies and treatments. Currently, the latest pharmaceutical treatment is only available in infusion centers, and Mendocino County's extreme shortage of neurologists and geriatricians makes the difficult steps of accepting and then dealing with a fatal diagnosis even more daunting.
Alzheimer's Association's Chief Science Officer Dr. Maria Carrillo discussed some of the most promising facets of Alzheimer's research. "This is definitely a global race. There are a lot of companies and academic groups that are getting in the race to try to determine if we can use a blood test- the Holy Grail- in order to determine if an individual has not only these protein changes in their brain, but maybe even make a definitive diagnosis with blood." Along with blood tests, which are still only in the research stage, the way clinicians think about Alzheimer's has changed dramatically, with the focus on earlier, more subtle symptoms that can be addressed through a combination of lifestyle changes and new medications- which unfortunately do not yet cure the disease, but help to prolong cognition.
Biomarkers- measurable biological changes that can show abnormal levels of beta-amyloid and tau proteins in the fluid surrounding the brain are helping to identify brain changes at the preclinical level. At this level, the brain can compensate for many of these early changes, enabling people to function normally in their daily lives. Research shows that the disease actually begins 20 years or more before the onset of symptoms. These identification tools are not yet widely available, and not everyone with preclinical Alzheimer's will develop some of the most serious symptoms, but researchers are stressing how important it is for both patients and clinicians not to ignore subtle problems with memory, language or thinking. The newest drugs in the dementia pharmacy are designed to treat those in the earliest stages off the disease.
Lecanemab is an intravenous infusion therapy that targets and removes beta-amyloid from the brain. It has received approval from the FDA to treat early Alzheimer's disease, including people living with mild cognitive impairment or mild dementia due to Alzheimer's- those who have confirmation of elevated beta-amyloid in the brain. Lecanemab lowers beta-amyloid and reduces cognitive and functional decline in people living with early Alzheimer's. Another drug- Donanemab is currently in a Phase 3 clinical trials and the results are promising. It's expected that the FDA will announce a decision on this medication sometime this year. Thus far, trials demonstrate that the drug significantly slows cognitive and functional decline in people living with early symptomatic Alzheimer's disease- either mild cognitive impairment or mild dementia.
Risk-factors for Alzheimer's and dementia include the simple fact of being old- 65 and above, which is why we will see a dramatic increase in people with Alzheimer's dementia as the Boomer generation ages. There is also a genetic risk for those who possess specific genetic profiles. In my case, having an immediate family member with dementia increases the odds that I will develop the disease.
What advocates and researchers are looking for is more time. There is still no cure on the horizon. And the simple stats regarding how many people will suffer with Alzheimer's is absolutely astonishing. Currently, the Alzheimer's Association states that nearly 7 million Americans are living with some form of Alzheimer's or dementia. That number is expected to skyrocket to nearly 13 million by 2050.
But it's not just the number of people with the disease- it's the number of caregivers needed to support this growing population that is staggering. The average person with Alzheimer's must, with the support of family, friends and caregivers navigate a complex medical maze involving specialists, medications, counselors and primary care providers. Decisions must be made about a person's welfare, end-of-life choices, finances, housing, children, spouses and even pets- while a person is still able to participate in those activities.
In 2023, 11.5 million family members provided an unbelievable 18.4 billion hours of unpaid help to their loved ones- at a rate of approximately 31 hours per week. That is about 57 percent of the net value of Walmart's total revenue in fiscal year 2023! In my own situation, it is only because my mother had no significant income that qualified her for in-home supportive services. Because of that, I was able to care for her while continuing to write stories for the Journal. I became her paid caregiver- albeit at a paltry hourly wage- something that will change locally due to the stalwart efforts of the members of the Service Employees International Union.
Luckily, I have a partner who became my mother's second caregiver. We often marveled at the sheer impossibility of a single person expected to care for their spouse- a scenario repeated endlessly in this town, county, state and country.
More needs to be done- on all fronts. Currently, only half of Medicare beneficiaries who have a diagnosis of Alzheimer's or other dementia report being told of their diagnosis. There is a large swath of Americans who have dementia and don't know it- which results in delayed treatment and all kinds of pain for the person and their families.
In California, it is estimated that in 2020, 719,000 people had Alzheimer's- one of the states with the highest prevalence in the country. In 2021, Alzheimer's was the 5th cause of death among adults 65 and older- and that figure is a best-guess due to the dramatic effect of the pandemic on mortality. It is estimated that between 2021 and 2031, more than one million new workers must be added to the workforce- more than any other single occupation in the US- to care for the growing numbers of people with dementias.
These are just a few of the startling facts I discovered during my first two days at the Alzheimer's Impact Advocacy Forum. From there, we geared up for Hill Day- an opportunity to speak directly with our elected officials about how they can assist Alzheimer's patients, caregivers, researchers and healthcare providers. When I returned to Ukiah, I was invited to attend another "Hill Day-" this time in Sacramento- to learn about State bills and speak with State Assemblymen McGuire and Wood. Thankfully, I will once again be accompanied by my "purple partner in crime" Elizabeth Santos, and when I return I'll provide an update on the status of both State and Federal Alzheimer's legislation.
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