New Alzheimer's Association report finds growing caregiver burden in New York state

Annual facts and figures report shows number of caregivers increased in New York

Submitted by the Alzheimer’s Association

The Alzheimer’s Association 2023 Alzheimer’s Disease Facts and Figures report finds the burden on New York Alzheimer’s and dementia caregivers is growing. The new report released Wednesday shows 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.

The new report also reveals that New York caregivers and those across the country face significant emotional, physical and health-related challenges as a result of caregiving as well, including:

√ 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.

√ Seventy-four percent of dementia caregivers report they are “somewhat concerned" to “very concerned” about maintaining their own health since becoming a caregiver. In New York, 12% 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.

“This year’s facts and figures report underscores the considerable physical and emotional toll New York caregivers experience when caring for someone living with Alzheimer’s,” said Amanda Nobrega, interim executive director of the Alzheimer’s Association Western New York Chapter. “It clearly underlines the need for caregiver support in New York and across the region. The Alzheimer’s Association offers free local support throughout our state, including support groups and education, as well as the association’s 24/7 helpline. This support can be a lifeline to caregivers.”

The annual facts and figures report provides an in-depth look at the latest national and state-by-state statistics on Alzheimer’s disease prevalence, mortality, caregiving, dementia care workforce and costs of care. According to the report, there are 6.7 million people 65 and older living with Alzheimer’s dementia in the United States, including roughly 410,000 in New York state.

Direct Care Workforce Shortage Looming

The year’s report also finds a shortage looming for direct care workers in New York and across the country. Direct care workers, including nurse aides, nursing assistants, home health aides and personal care aides play a vital role in caring for people living with Alzheimer’s and other dementia in private homes, community-based settings such as adult day services and residential care, skilled nursing homes and other settings. According to the report, an estimated 1.2 million additional direct care workers will be needed between 2020 and 2030 – more new workers than in any other single occupation in the United States.

In 2020, 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.

Although more direct care workers will be needed in the years ahead, the long-term care field is already struggling to fill existing direct care positions. Turnover rates are high in this workforce – estimated at 64% annually for direct care workers providing home care and 99% for nursing assistants in nursing homes, according to the report.

“The report sounds an important alarm on the urgent need to attract and retain these essential front-line care workers,” Nobrega 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.”

This year’s report also examines the capacity of the medical specialty workforce essential for diagnosis, treatment and ongoing care for people living with Alzheimer’s and all other dementia. The shortage of dementia care specialists could soon become a crisis for Alzheimer’s disease care, especially with the recent Food and Drug Administration (FDA) approval of new treatments targeting the underlying biology of Alzheimer’s disease, which is reframing the health care landscape for people with early-stage Alzheimer’s or mild cognitive impairment (MCI) due to Alzheimer’s disease.

According to the report, 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.

Special Report Finds Earlier Discussion of Cognitive Concerns Needed

An accompanying special report, The Patient Journey In an Era of New Treatments, offers new insights from patients and primary care physicians (PCPs) on current barriers that impede earlier discussion of cognitive concerns. Focus groups reveal many people with subjective cognitive decline (self-reported memory concerns) do not discuss cognitive symptoms with their health care providers.

Previous special reports have indicated many people believe their experiences are related to normal aging, rather than a potential diagnosable medical condition. Some of the reasons for not discussing this include:

√ Patients lack knowledge and awareness of cognitive health issues.

√ Patients have great tolerance for their symptoms, leading them to delay discussions with their physicians.

√ Patients are waiting for the problem to have a meaningful impact on their life first, suggesting that the problem is serious and not normal aging.

Different racial and ethnic groups express concerns about care delivery and specific barriers to care which influences their interactions with healthcare providers. For example, Black Americans, American Indians, Alaska Natives and Hispanic Spanish-speaking Americans strongly preferred holistic approaches to treatment that minimize the use of biomedical interventions or prescription medication.

Black Americans, American Indians and Alaska Natives indicated the presence of historical racism in the medical field, making many individuals feel that they do not receive adequate, culturally competent care. Some participants also indicated that their community’s mistrust of doctors and/or Western medicine prevents them from talking to a doctor.

In addition to reluctance from individuals, the report revealed PCPs are not proactively asking their patients about cognitive issues either.

√ PCPs shared they hesitate to initiate conversations about cognitive decline and will wait until family members bring it to their attention.

√ PCPs expressed concern about how people will be cared for if an assessment uncovers Alzheimer's disease or other dementia in light of specialist shortages and few referral options.

√ Importantly, PCPs view family members as influential and critical partners in care, often relying on them to initiate conversations about memory and thinking problems they observe in their loved ones, making the role of caregivers even more significant.

“Both physicians and patients need to make discussions about cognition a routine part of interactions,” said Nicole Purcell, D.O., M.S., a neurologist and senior director, clinical practice, Alzheimer’s Association. “These new treatments potentially treat mild cognitive impairment or early-stage Alzheimer’s disease with confirmation of amyloid, so it’s really important conversations between patients and doctors happen early or as soon as symptoms occur, while treatment is still possible and offers the greatest potential benefit.”

Future Outlook and Opportunities

The last two decades have marked an increase in the development of a new class of medicines that target the underlying biology and aim to slow the progression of Alzheimer’s disease.

Even with that progress, access to the FDA-approved treatments for Alzheimer’s is being severely hampered. The unprecedented decision by the Centers for Medicare & Medicaid Services (CMS) not to cover payment for the drugs without patients enrolling in additional clinical trials continues to keep patients from accessing treatments. These are the only FDA-approved treatments to ever receive this restriction from CMS. The Alzheimer’s Association calls on CMS to change its decision and provide unrestricted coverage for current and future treatments to all who could benefit.

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

Additional data from the report and top statistics on Alzheimer’s disease prevalence, mortality, cost of care, caregiving and dementia care workforce is available here. Full text of the 2023 Alzheimer’s Disease Facts and Figures report, including the accompanying special report, “The Patient Journey In an Era of New Treatments” can be viewed at alz.org/facts. The report will also appear in the April 2023 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association.

About the Alzheimer’s Association

The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead the way to end Alzheimer's and all other dementia – by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia. Visit alz.org or call 800-272-3900.