ROCHESTER, N.Y. (WROC) — The 2023 Alzheimer’s Disease Facts and Figures report was released on Wednesday by the Alzheimer’s Association — and shows that the burden on Alzheimer’s and dementia caregivers in New York is growing.

According to the report, there were an estimated 546,000 dementia family caregivers across the state in 2022, providing 884 million hours of unpaid care valued at $19.09 billion.

New York caregivers, according to the report, face significant emotional, physical, and health-related challenges as a result of caregiving, including the following:

• Dementia caregivers report higher rates of chronic conditions, including stroke, heart disease, diabetes, and cancer compared to caregivers of people without dementia or non-caregivers. In New York state, 59% of caregivers reported at least one chronic condition.
• The prevalence of depression is higher among dementia caregivers when compared to caregivers for other conditions. In New York, nearly one-quarter of caregivers reported depression.
• 74% of dementia caregivers report they are “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver. In New York, 12 percent report frequent poor physical health.
• Across the country, 59% of dementia caregivers report high to very high emotional stress due to caregiving and 38% report high to very high physical stress due to caregiving.

Director of Finger Lakes Excellence for Alzheimer’s Disease & Professor of Psychiatry at URMC Dr. Carol Podgorski says with the ongoing staffing shortages, there will never be enough caregivers for these patients.

“I think what has happened since in the pandemic so many people were in the workforce, they decided they didn’t want to do this work anymore,” Dr. Podgorski said. “So now when people are welcoming people into their homes, there is no one to come into the homes. And that’s part of the problem is we can’t recruit the specialists but then our current healthcare system doesn’t pay for all those wrap-around services.”

The findings also shows that a shortage is looming for direct care workers in New York, as well as nationally.

The Alzheimer’s Association says roles such as nurse aides, nursing assistants, home health aides and personal care aides play a vital role in caring for those living with Alzheimer’s and other dementia in both private homes and adult day services, residential care, and skilled nursing homes.

Caregivers like Nate Brown Jr. must exert much of their own energy into helping patients remember.

“When your loved one doesn’t remember you and throws food at you and all the things, they never did to you before in your entire life, that’s kind of stressful because you not just have to get used to that, but have to understand that’s the disease,” Brown Jr. told News 8. “My mom was a G, straight like that, and so to see her like this is gut-wrenching.”

They add that an estimated 1.2 million additional direct care workers will be needed between 2020 and 2030, which is more new workers than any other single occupation in the United States.

In 2020, the Alzheimer’s Association says there were an estimated 510,870 home health and personal care aids in New York state, according to the report. By 2030, 710,570 will be needed — a 39.1 % increase.

The report also touched on turnover rates, which they say are high for those caring for Alzheimer’s patients. The estimates say that each year, the turnover rate for direct care workers providing home care is 64%. For nursing assistants working in nursing homes that care for Alzheimer’s patients, the estimated turnover rate is an eye-popping 99%.

“The report sounds an important alarm on the urgent need to attract and retain these essential front-line care workers,” Executive Director of the Alzheimer’s Association Rochester Finger Lakes Region Chapter Teresa Galbier said. “These valuable professionals are not only providing direct care to people living with Alzheimer’s and other dementia, but they are vital in supporting family caregivers, particularly for those providing in-home care.”

According to the Alzheimer’s Association, most states, including New York will have to nearly triple the number of geriatricians to effectively care for those 65 and older who are projected to have Alzheimer’s dementia in 2050. In 2021, there were only 568 geriatricians statewide. By 2050, 818 geriatricians will be needed to care for just 10% of residents across the state living with Alzheimer’s dementia.

Brown Jr. says the only resolution is to either find a cure for the disease or pay more for these positions in the meantime.

“You’re not paying them what they’re worth. Taking care of somebody, do you know what those ladies do for my mom? She can’t do anything, so think about that. 24 hours a day,” Brown Jr. said.

Another report, The Patient Journey in an Era of New Treatments, included information regarding current barriers that set back an earlier discussion of cognitive concerns between patients and primary care physicians.

They say patients are not discussing this due to lack of knowledge and awareness to cognitive health issues, patients have great tolerance for their symptoms, and patients are waiting for the problem to have a meaningful impact on their life.

The report adds that while patients are reluctant, PCPs are hesitant to have conversations with their patients regarding cognitive decline, and may wait for family members to bring it to their attention.

With all of this considered, the Alzheimer’s Association says the last two decades have marked an increased in the development of a new class of medicines that target to aim to slow the progression of Alzheimer’s disease.

The association adds that with this progress, the FDA-approved treatments for Alzheimer’s is being severely hampered.

The Alzheimer’s Association offers a 24/7/365 helpline at (800) 272-3900. Through this free service, the association says specialists and master’s-level clinicians offer confidential support and information to people living with dementia, caregivers, families and the public.