The Alzheimer’s Association 2022 Alzheimer’s Disease Facts and Figures report unearthed new insights related to 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 increased risk of dementia with advancing age.
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 and costs of care. This year’s report also includes a new section on dementia care workforce. 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 United States.
“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 age 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 and 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 and 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%).
“Clinical trials are critical to understanding more about current and potential Alzheimer’s disease treatments and care,” Carrillo said. “As research accelerates, we need to better address cultural concerns, access issues and other factors to ensure increased participation in clinical trials among all backgrounds, especially among diverse populations.”
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 could 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 and 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.
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.
The report highlights preliminary and anecdotal data indicating the pandemic is also having adverse effects on many family caregivers. It notes 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.”
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. Full text of the 2022 Alzheimer’s Disease Facts and Figures report, including the accompanying special report, More Than Normal Aging: Understanding Mild Cognitive Impairment can be viewed at alz.org/facts. The report will also appear in the April 2022 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association.