New York has the second-highest prevalence of people diagnosed with Alzheimer's disease of all 50 U.S. states, according to a new study by the Alzheimer's Association.
Health experts and lawmakers are exploring ways to improve services that would make a difference as a quarter of New Yorkers will be over the age of 60 by the year 2030, according to the state Office for the Aging.
About 410,000 New Yorkers have been diagnosed with Alzheimer's disease, per the state Health Department, which is expected to grow to 460,000 people by 2025. There's a higher rate of Alzheimer's and related dementias among people of color, low-income and rural communities.
"We are second highest from what I've read in the research that I've seen, but we really are leading the way in trying to make a difference in services," said Valarie Drown, director of the Alzheimer's Disease Caregiver Support Initiative.
New York has the nation's second-highest rate of Alzheimer's Disease and related dementias after the state invested millions of dollars in the last several years to bolster support for patients and caregivers.
County-level Alzheimer's Association data shows the Bronx has the highest rate of Alzheimers in the state at 16.6% of the population, and is tied for highest rate in the nation with Baltimore, Maryland and Miami-Dade County, Florida.
People of color, and New Yorkers who live in low-income and rural areas, are most likely to have Alzheimer's dementia — connected to less access to quality food, health care and exposure to higher rates of air pollution that may contribute to the prevalence of the disease.
Alzheimer’s disease and dementia resources are available at the county level with state Health Department funding of the Alzheimer’s Disease Caregiver Support Initiative, which funds 10 regional Centers of Excellence for Alzheimer’s Diseases, an Alzheimer’s Disease Community Assistance Program and Caregiver Support Initiative programs, according to the DOH.
The initiative has funded several projects to support education and resources for people with dementia, including improved consultation, diagnoses, support groups, training and a 24-hour hotline.
Drown said building a workforce trained in dementia care is needed most.
"We need funding to be able to go into the workforce development," Drown said. "We need people to have a passion and a desire to work with individuals with dementia, to work with elderly people in general and somehow to figure out a way to take that funding and assist with workforce retention because we have people who enter the field, but then quickly leave the field."
Drown lives in the North Country. She takes care of her mother, who has Alzheimer's disease, and has a child with special needs. She says improved care is also vital for caregivers, and is pushing lawmakers to increase funding for dementia-related support and services, especially in rural areas.
"We have not only an underserved population because of socioeconomic status, but then we also have an underserved based on population density," Drown said.
There's also a bipartisan push at the federal level as the prevalence of Alzheimer's increases nationwide. At least 6.7 million people live with Alzheimer's disease in the United States, according to the National Institute on Aging — but that number reflects official diagnoses and is expected to be a significant undercount.
U.S. Rep. Paul Tonko, D-20, introduced legislation earlier this year to improve care for Alzheimer's patients with underlying chronic conditions, including hypertension, diabetes and heart disease.
The bill would provide coordinated and managed care for multiple diagnoses, eliminates cost-sharing for patients and pays providers a monthly sum based on the complexity and quality of a person's care.
"It really puts into a working model, a transition a transformative piece, so that Medicare and others can respond to this in that holistic way," the congressman said Friday. "People with Alzheimer's oftentimes are impacted by other chronic diseases, and so as they try to manage all of that activity and all of those health challenges in their lives they and their caregivers require, I think, a better response."
It's unclear why New York has the second highest number of people officially diagnosed with Alzheimer's, but the disease and related dementias often develop due to environmental factors, like exposure to certain toxins and pollutants, diet or genetic predisposition.
"It's important, I think, for us to address it financially and to address it from a service side of service perspective," Tonko said, adding if the bill becomes law, the coordinated medical care would result in a cost-savings for families and the federal government.
"...As to numbers of people per capita that are impacted by the disease, all of this data compilation will be helpful in conquering the disease because it's impacting so many millions of people," he said.
Meanwhile, state officials remain focused on helping New York's increasing aging population age in place, or at home, and continue to work on developing the state's first Master Plan for Aging mandated by Gov. Kathy Hochul last year. A public listening session was held in Western New York on Thursday.
“Given that approximately 410,000 residents of New York are grappling with Alzheimer’s disease or similar forms of dementia, the department remains dedicated to guaranteeing the availability and accessibility of programs and services aimed at offering care and assistance to individuals living with dementia and their caregivers," a spokesperson with the state Health Department said in a statement Friday. "This commitment extends to the innovative Master Plan for Aging, which under Gov. Kathy Hochul’s leadership, is a transformative blueprint designed to coordinate existing and new state policies and initiatives, geared toward enhancing the well-being of older adults and their families across New York’s diverse communities.”
State lawmakers have proposed legislation to create an Alzheimer's disease outreach and education program, and establishing a dementia and Alzheimer's disease program database, among other related measures, that did not pass this session.