New Alzheimer's Association report finds doctors, public face challenges in understanding & distinguishing early development from 'normal aging'

Report also shows latest statistics & information on Alzheimer’s prevalence, incidence, mortality, cost of care in New York, nationally

Submitted by the Alzheimer’s Association

The Alzheimer’s Association 2022 Alzheimer’s Disease Facts and Figures report unearthed challenges both doctors and the American public face in understanding and diagnosing mild cognitive impairment (MCI), which is characterized by subtle changes in memory and thinking. It is estimated 10% to 15% of individuals with MCI go on to develop dementia each year. And as the size of the U.S. population age 65 and older continues to grow (from 58 million in 2021 to 88 million by 2050), so too will the number and proportion of Americans with Alzheimer’s or other dementias, given the increased risk of dementia with advancing age.

The 2022 Facts and Figures report provides an in-depth look at the latest national statistics on Alzheimer’s disease prevalence, incidence, mortality, costs of care and impact on caregivers. This year’s report also includes a new section on dementia care workforce. New disease-related statistics for New York revealed the following:

√ Number of residents aged 65 and older living with Alzheimer’s: 410,000

√ Estimated number of state residents living with Alzheimer’s in 2025: 460,000

√ Percentage change: 12.2%

√ Statewide deaths from Alzheimer’s disease (2019): 3,753

√ Number of New York residents serving as unpaid family caregivers: 563,000

√ Total hours of unpaid care provided: 835,000,000

√ Total value of unpaid care: $16,082,000,000

“The new Facts and Figures report clearly outlines the burden that many New York families are going through,” stated Jill Horner, executive director of the Alzheimer’s Association Western New York Chapter. “At the Alzheimer’s Association, our mission is clear: We must continue to support all those affected by Alzheimer’s and dementia with our local care and support services, and continue to fund critical research.”

An accompanying special report, “More than Normal Aging: Understanding Mild Cognitive Impairment (MCI),” for the first time examined both public and primary care physicians’ (PCP) understanding of real-world awareness, diagnosis and treatment of MCI and MCI due to Alzheimer’s disease in the U.S.

“Mild cognitive impairment is often confused with ‘normal aging,’ but is not part of the typical aging process,” said Maria Carrillo, Ph.D., chief science officer, Alzheimer’s Association. “Distinguishing between cognitive issues resulting from normal aging, those associated with MCI and those related to MCI due to Alzheimer’s disease is critical in helping individuals, their families and physicians prepare for future treatment and care.”

It is estimated 12% to 18% of people aged 60 or older have MCI. While some individuals with MCI revert to normal cognition or remain stable, studies suggest 10% to 15% of individuals with MCI go on to develop dementia each year. About one-third of people with MCI due to Alzheimer’s disease develop Alzheimer’s dementia within five years. Identifying which individuals living with MCI are more likely to develop dementia is a major goal of current research, potentially enabling earlier disease intervention and treatment.

Lack of Awareness, But Still Concern

Despite the prevalence among aging Americans, the new report found more than 4 in 5 Americans (82%) know very little or are not familiar with MCI. When prompted with a description of MCI, more than half (55%) say MCI sounds like “normal aging.”

When MCI due to Alzheimer’s disease is described, almost half of respondents (42%) express worry about developing it in the future. Despite these concerns, a large majority (85%) would want to learn about Alzheimer’s disease early in its development, either during the MCI phase (54%) or mild dementia stage (31%).

Challenges in Dialogue & Diagnosis

Additional findings illuminate why individuals exhibiting MCI symptoms are reluctant to discuss them with their doctors, who face persistent challenges in diagnosis of their patients. Among the findings:

√ Fewer than half of respondents (40%) said they would see a doctor right away if they experienced MCI symptoms, while the majority (60%) would wait or not see a doctor at all.

√ Nearly 8 in 10 respondents (78%) expressed concerns about seeing a doctor for symptoms of MCI, citing reasons such as fear of receiving an incorrect diagnosis (28%); learning they have a serious problem (27%); fear of receiving an unnecessary treatment (26%); or believing symptoms will resolve in time (23%).

√ 75% of PCPs say they are on the front lines of providing care for patients with MCI. However, just two-thirds feel comfortable answering patient questions related to MCI (65%) and/or discussing how MCI may be related to Alzheimer’s disease (60%).

√ PCPs are committed to learning more about MCI due to Alzheimer’s disease, and see clear benefits of making a specific diagnosis (90%). Yet, more than three-quarters of PCPs (77%) report MCI due to Alzheimer’s being difficult to diagnose, and half (51%) do not usually feel comfortable diagnosing it.

“Understanding and recognizing mild cognitive impairment due to Alzheimer’s disease is important, because it provides an earlier opportunity to intervene in the Alzheimer’s disease continuum,” Carrillo said. “While currently there is no cure for Alzheimer’s disease, intervening earlier offers an opportunity to better manage the disease and to potentially slow progression during a time when individuals are functioning independently and maintaining a good quality of life.”

Racial & Ethnic Perspectives

Concerns and confusion around MCI are evident across diverse populations as well:

√ Awareness and understanding of MCI is low across all racial and ethnic groups surveyed: white Americans (18%), Asian Americans (18%), Native Americans (18%), Black Americans (18%) and Hispanic Americans (17%).

√ Hispanic (79%) and Black (80%) Americans report wanting to know if they had Alzheimer’s disease during an earlier stage (MCI or mild Alzheimer’s dementia), which is slightly lower when compared to white (88%) and Asian (84%) and Native Americans (84%).

√ Asian (54%) and Hispanic (52%) Americans are more likely to worry about developing MCI compared to Native (47%), white (45%) and Black Americans (44%).

√ Asian (50%), Hispanic (49%) and Black (47%) Americans are most likely to worry about developing MCI due to Alzheimer’s disease, followed by Native (41%) and white Americans (39%).

√ Receiving an incorrect diagnosis was the top concern for not seeing a doctor right away for MCI symptoms among Asian (38%), Black (31%) and white Americans (27%). The top reason cited by Hispanic (27%) and Native Americans (31%) was learning they might have a serious problem.

√ Overall, 43% of Americans cited clinical trial participation as a reason for early diagnosis of Alzheimer’s disease. However, white Americans (50%) were twice as likely as Hispanic Americans (25%) to cite clinical trial participation as a reason for early diagnosis, followed by Asian (40%), Native (35%) and Black Americans (32%).

Importance of Early Intervention, Physician Recommendations

Of survey respondents who wanted to learn about Alzheimer’s disease during the MCI phase, more than half (70%) noted the need for planning and opportunities for treatment. Early diagnosis gives families time to make legal, financial and care decisions for the future, based on a patient’s concerns and priorities, and is associated with lower overall health care costs. Additionally, the vast majority of PCPs (86%) said early intervention can slow progression of cognitive decline.

Yet, only 1 in 5 PCPs (20%) report being familiar with clinical trials available to their patients with MCI, and only 1 in 4 PCPs (23%) say they are familiar with new therapies in the pipeline to address MCI due to Alzheimer’s disease. When MCI is detected, PCPs most often recommend lifestyle changes (73%).

“There is more work to be done when it comes to expanding primary care physicians’ readiness to diagnose cognitive impairment, including MCI and MCI due to Alzheimer’s disease, particularly as diagnostic advancements are being made,” said Morgan Daven, vice president, health systems, Alzheimer’s Association. “This includes primary care physicians’ awareness of new potential treatments and patient participation in Alzheimer’s disease-related clinical trials and research.”

Future Outlook & Opportunities

Despite the devastating toll Alzheimer's disease continues to have on individuals and families across the country, both patients and PCPs express optimism that new treatments to combat Alzheimer’s disease are on the horizon. The surveys found more than 7 in 10 Americans (73%) expect new treatments to delay the progression of Alzheimer’s disease will be available within the next decade. More than one-half of Americans believe there will be new treatments to stop progression (60%) and to prevent (53%) Alzheimer’s disease. Among PCPs, 82% expect there will be new treatments to delay the progression of Alzheimer’s disease within the next decade. More than half of PCPs (54%) anticipate there will be treatments to stop disease progression, and 42% believe there will be treatments to prevent Alzheimer’s disease.

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. As of February 2022, there are 104 disease-modifying treatments being evaluated in clinical trials or at various stages of regulatory approval. These potential therapies are aimed at slowing the progression of MCI due to Alzheimer’s disease and mild Alzheimer’s dementia, according to the Alzheimer’s Association.

Workplace Shortages

This year’s report also includes a new section on dementia care workforce. According to the report, most states – including New York – will have to nearly triple the number of geriatricians who were practicing in 2021 to effectively care for approximately 10% of those 65 and older who are projected to have Alzheimer’s dementia in 2050.

√ In New York, there are approximately 568 geriatricians.

√ By 2050, 250 more geriatricians are needed to serve 10% of those 65 and older across the state.

In addition, the report looked at the number of direct care workers such as nurse aides and nursing assistants, home health aides and personal care aides needed between 2018 and 2028. To meet the demand, almost every state, including New York, needs to double the number of direct care workers.

√ As of 2018, there are approximately 437,300 home health and personal care aides in New York

√ By 2028, the state will need close to 700,000 home health and personal care aides, an almost 60% increase.

Impact of COVID-19

The report also examined the devastating impact the COVID-19 pandemic has had on people living with Alzheimer’s disease. While it is unknown how COVID-19 will influence the number and proportion of people in the U.S. with Alzheimer’s, COVID-19 has clearly had a dramatic effect on mortality from Alzheimer’s and other dementias. According to the report, there were 44,729 more deaths from Alzheimer’s disease and other dementias in 2020 compared with averages during the previous five years – a 17% increase.

Additional data from the report is included below and top statistics on Alzheimer’s disease prevalence, mortality, cost of care, caregiving and dementia care workforce is available here.

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 www.alz.org or call 800-272-3900.