NY tops nation in care costs for Alzheimer’s, dementia

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SYRACUSE — Care costs for Alzheimer’s disease and dementia across New York totaled more than $5.4 billion in 2020, the most spent by any state in the nation, according to a report released today by the Alzheimer’s Association.

The 2021 Alzheimer’s Disease Facts and Figures report shows New York is the only state in the nation to spend more than $5 billion on dementia care — spending $5.453 billion on such care last year. It’s the fifth consecutive year New York has led the nation in Medicaid spending on dementia care. Costs are projected to increase nearly 16% percent by 2025 to more than $6.3 billion.

“The crushing impact of Alzheimer’s disease to our economic and health care systems runs only second to the effect it has on the individual with the disease and their family members,” said Catherine James, chief executive officer of the Alzheimer’s Association, Central New York Chapter. “The new Facts and Figures report shows that Alzheimer’s disease and other dementias continue to be a significant burden for too many New Yorkers.”

Among the statistics in the 2021 Facts and Figures report:

The number of New Yorkers aged 65 and older living with Alzheimer’s disease will grow 12.2% by 2025. Currently, 410,000 New Yorkers live with Alzheimer’s; in four years, 460,000 are estimated to have the disease. Currently, more than six million Americans live with Alzheimer’s disease;

More than a half-million New Yorkers are unpaid caregivers for someone living with Alzheimer’s or other dementias. In 2020, 586,000 people in New York were dementia caregivers, contributing 774 million hours of unpaid care. An economic model used by the Alzheimer’s Association places the value of this care at $14.6 billion;

Alzheimer’s disease was reported as a cause of death for 3,753 people in New York in 2019, the most recent year of data provided by the Centers for Disease Control and Prevention.

Nationwide, there were at least 42,000 more deaths from Alzheimer’s and other dementias in 2020 compared with averages over the previous five years – a 16% increase.  In New York, there were 2,210 more deaths from Alzheimer’s and dementia in 2020 than compared to averages over the past five years – a 18.8% increase.

More than one-third of Black Americans (36%) and nearly one-fifth of Hispanic Americans (18%) and Asian Americans (19%), believes discrimination would be a barrier to receiving Alzheimer’s care. In addition, half or more of non-White caregivers say they have experienced discrimination when navigating health care settings for their care recipient. Two-thirds of Black Americans (66%) believe it is harder for them to get excellent care for Alzheimer’s disease or other dementias. Likewise, 2 in 5 Native Americans (40%) and Hispanic Americans (39%) believe their own race or ethnicity makes it harder to get care, as do one-third of Asian Americans (34%).

The report highlights preliminary and anecdotal data indicating the COVID-19 pandemic is also having adverse effects on many family caregivers. It notes that pandemic-related caregiving challenges, including the shutdown of adult day care centers and the inability of families to visit or communicate with relatives in long-term care settings have caused “emotional distress and other negative outcomes among caregivers.”  

“More study is needed to understand the exact reasons why deaths attributable to Alzheimer’s and dementia during the pandemic have increased so dramatically,” James said. “In addition, many caregivers have been unable to visit loved ones in these settings, resulting in social isolation for the care recipient and causing enormous stress for these families.”

The Alzheimer’s Association provides around-the-clock information, support and referrals to individuals and families impacted by Alzheimer’s and all other dementia at its 24/7 Helpline – 800.272.3900 – and website. Its Central New York Chapter continues to provide free care planning meetings, support groups and education programs in remote settings due to the pandemic.

“Education remains the best solution to the challenges dementia puts forth,” James said. “Until we have a treatment, prevention or cure available, learning about these diseases and how to live successfully with them is the best way to fight back.”

“Despite ongoing efforts to address health and health care disparities in Alzheimer’s and dementia care, survey results show there is still a lot of work to be done,” said Carl V. Hill, Ph.D., MPH. chief diversity, equity and inclusion officer, Alzheimer’s Association. “Clearly, discrimination, lack of diversity among health care professionals and mistrust in medical research create significant barriers to care and demand the country’s full attention.”
 

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