NYU clinical professor Yvonne Latty never expected the hardships faced as a caregiver for her mother living with Alzheimer’s. From the 24/7 care to the rising medical bills, the experience has been overwhelming. Her attempts to access a diagnosis and treatment for her mother in the Bronx left her angry, frustrated and confused. A doctor smugly suggested Yvonne “Google” her mother’s condition and devise a plan for her with the help of URLs.
Stories like Latty’s are common as the rapid aging of 55 million Latinos puts the country’s largest minority group in the crosshairs of a disease that often goes unnamed in obituaries and physicians’ offices. Yet, Alzheimer’s growing prevalence will have far-reaching consequences for Latino families and the nation, according to a new report from the USC Roybal Institute on Aging and LatinosAgainstAlzheimer’s, a network of UsAgainstAlzheimer’s.
“Alzheimer’s and Latinos: New Numbers Behind the Crisis” finds the number of Latinos in the U.S. living with Alzheimer’s could increase from 379,000 in 2012 to 3.5 million by 2060 ― a growth of 832 percent ― if a medical breakthrough is not discovered that cures or slows the progression of the disease. As the number of Latino families touched by Alzheimer’s increases, the report finds the economic impact on the Latino community will reach a cumulative $2.35 trillion by 2060, largely due to costs associated with the intensive care required.
Alzheimer’s is already our nation’s costliest disease, with an annual bill of about $236 billion, paid mostly by Medicare and Medicaid. The report findings signal this tab could skyrocket in the future as the Latino older adult population grows from approximately four million today to more than 20 million in 2060.
While Hispanic longevity is usually an asset, it could prove deadly, given the likelihood of developing Alzheimer’s doubles about every five years after age 65. After age 85, the risk reaches nearly 50 percent. Higher rates of health issues like diabetes and heart disease further contribute to Latinos being 50 percent more likely to get Alzheimer’s than non-Latino whites. Despite this increased risk, Latinos are less likely than non-Latino whites to receive an Alzheimer’s diagnosis, delaying treatment options and care planning.
Communities of color are largely unprepared for the financial hardship of Alzheimer’s. Families can expect to spend between $41,000 and $56,000 annually in dementia-related costs, according to a RAND Corporation study. This is a frightening prospect for Latino communities where the median household income was $40,785 in 2010, down 7.2 percent following the Great Recession of 2008. A Pew report found the wealth of white households grew to more than 10 times the wealth of Latino households in the same period. Further, Latinos continue to have the highest uninsured rates among major U.S. racial or ethnic groups.
While the latest report reveals Latino families dealing with Alzheimer’s are more likely to choose affordable care alternatives or rely on unpaid informal care, total costs for Latinos with the disease will grow faster than for non-Latino whites. Of the eight million Latino family caregivers in the U.S., there are approximately 1.8 million currently providing care for someone living with Alzheimer’s or dementia, often without access to formal training or support services.
But there is hope on the horizon. ResearchersAgainstAlzheimer’s Network finds there are 17 compounds in Phase III testing, the final stage of drug development. If effective, these drugs could be available in five years. While there are no promises, there is cause for cautious optimism.
To leverage these encouraging developments, we must make Alzheimer’s a Latino public health priority and call on policymakers, health officials, industry leaders and community-based organizations to address this challenge collaboratively, starting with public awareness. We need $2 billion in research funding annually, which experts say is necessary to give us the best shot of developing an effective treatment for the disease by 2025. And to ensure these treatments work for all communities, we need to include diverse voices and experiences in the Alzheimer’s research process, from lab researchers to clinical trial participants. Most importantly, we must do more to support family caregivers of every race and ethnicity with better access to resources, training, care planning services and research opportunities.
Millions of Latinos quietly struggle with Alzheimer’s today – as individuals living with the disease or as caregivers – who are often uncertain where to turn for resources or unaware that a progressive brain disease might be behind their forgetfulness or dad’s recent mood swings. We must bring Alzheimer’s out of the shadows in the Latino community and address this disease as a public health crisis that our nation cannot afford to ignore.
Daisy Duarte, an advocate for the LatinosAgainstAlzheimer’s Network and Alzheimer’s caregiver, also contributed to this post.