2024 Alzheimer's disease facts and figures.

This article describes the public health impact of Alzheimer's disease (AD), including prevalence and incidence, mortality and morbidity, use and costs of care and the ramifications of AD for family caregivers, the dementia workforce and society. The Special Report discusses the larger health care system for older adults with cognitive issues, focusing on the role of caregivers and non-physician health care professionals. An estimated 6.9 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060, barring the development of medical breakthroughs to prevent or cure AD. Official AD death certificates recorded 119,399 deaths from AD in 2021. In 2020 and 2021, when COVID-19 entered the ranks of the top ten causes of death, Alzheimer's was the seventh-leading cause of death in the United States. Official counts for more recent years are still being compiled. Alzheimer's remains the fifth-leading cause of death among Americans age 65 and older. Between 2000 and 2021, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 140%. More than 11 million family members and other unpaid caregivers provided an estimated 18.4 billion hours of care to people with Alzheimer's or other dementias in 2023. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $346.6 billion in 2023. Its costs, however, extend to unpaid caregivers' increased risk for emotional distress and negative mental and physical health outcomes. Members of the paid health care and broader community-based workforce are involved in diagnosing, treating and caring for people with dementia. However, the United States faces growing shortages across different segments of the dementia care workforce due to a combination of factors, including the absolute increase in the number of people living with dementia. Therefore, targeted programs and care delivery models will be needed to attract, better train and effectively deploy health care and community-based workers to provide dementia care. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are almost three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 22 times as great. Total payments in 2024 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $360 billion. The Special Report investigates how caregivers of older adults with cognitive issues interact with the health care system and examines the role non-physician health care professionals play in facilitating clinical care and access to community-based services and supports. It includes surveys of caregivers and health care workers, focusing on their experiences, challenges, awareness and perceptions of dementia care navigation.

Assessing Quality of Life, Economic Burden, and Independence Across the Alzheimer's Disease Continuum Using Patient-Caregiver Dyad Surveys.

Background: Alzheimer's disease (AD) and mild cognitive impairment (MCI) have negative quality of life (QoL) and economic impacts on patients and their caregivers and may increase along the disease continuum from MCI to mild, moderate, and severe AD. Objective: To assess how patient and caregiver QoL, indirect and intangible costs are associated with MCI and AD severity. Methods: An on-line survey of physician-identified patient-caregiver dyads living in the United States was conducted from June-October 2022 and included questions to both patients and their caregivers. Dementia Quality of Life Proxy, the Care-related Quality of Life, Work Productivity and Activity Impairment, and Dependence scale were incorporated into the survey. Regression analyses investigated the association between disease severity and QoL and cost outcomes with adjustment for baseline characteristics. Results: One-hundred patient-caregiver dyads were assessed with the survey (MCI, n = 27; mild AD, n = 27; moderate AD, n = 25; severe AD, n = 21). Decreased QoL was found with worsening severity in patients (p < 0.01) and in unpaid (informal) caregivers (n = 79; p = 0.02). Dependence increased with disease severity (p < 0.01). Advanced disease severity was associated with higher costs to employers (p = 0.04), but not with indirect costs to caregivers. Patient and unpaid caregiver intangible costs increased with disease severity (p < 0.01). A significant trend of higher summed costs (indirect costs to caregivers, costs to employers, intangible costs to patients and caregivers) in more severe AD was observed (p < 0.01). Conclusions: Patient QoL and functional independence and unpaid caregiver QoL decrease as AD severity increases. Intangible costs to patients and summed costs increase with disease severity and are highest in severe AD.

Dissonance in the face of Alzheimer's disease breakthroughs: clinician and lay stakeholder acceptance, concerns and willingness to pay for emerging disease-modifying therapies.

BACKGROUND: Introducing new disease-modifying therapies (DMTs) for Alzheimer's disease demands a fundamental shift in diagnosis and care for most health systems around the world. Understanding the views of health professionals, potential patients, care partners and taxpayers is crucial for service planning and expectation management about these new therapies. AIMS: To investigate the public's and professionals' perspectives regarding (1) acceptability of new DMTs for Alzheimer's disease; (2) perceptions of risk/benefits; (3) the public's willingness to pay (WTP). METHOD: Informed by the 'theoretical framework of acceptability', we conducted two online surveys with 1000 members of the general public and 77 health professionals in Ireland. Descriptive and multivariate regression analyses examined factors associated with DMT acceptance and WTP. RESULTS: Healthcare professionals had a higher acceptance (65%) than the general public (48%). Professionals were more concerned about potential brain bleeds (70%) and efficacy (68%), while the public focused on accessibility and costs. Younger participants (18-24 years) displayed a higher WTP. Education and insurance affected WTP decisions. CONCLUSIONS: This study exposes complex attitudes toward emerging DMTs for Alzheimer's disease, challenging conventional wisdom in multiple dimensions. A surprising 25% of the public expressed aversion to these new treatments, despite society's deep-rooted fear of dementia in older age. Healthcare professionals displayed nuanced concerns, prioritising clinical effectiveness and potential brain complications. Intriguingly, younger, better-educated and privately insured individuals exhibited a greater WTP, foregrounding critical questions about healthcare equity. These multifaceted findings serve as a guidepost for healthcare strategists, policymakers and ethicists as we edge closer to integrating DMTs into Alzheimer's disease care.

Effects of home-based and telerehabilitation exercise on mental and physical health, and disease cost in people with Alzheimer's disease: A meta-analysis.

BACKGROUND: Alzheimer's disease (AD) is a very disabling long-term disease that requires continuous regular care. A cost-effective and sustainable means of such care may be physical activity or exercise delivered at home or through telerehabilitation. The aim of this study is to determine the effects of home-based or telerehabilitation exercise in people with AD. METHOD: PubMED, Embase, Web of Science (WoS), PEDro, and CENTRAL were searched for randomized controlled trials until January 2024. The data extracted include the characteristics of the participants, the interventions used for both experimental and the control groups, the baseline, post-intervention and follow-up mean and standard deviation values on the outcomes assessed and the findings of the included studies. Cochrane risks of bias assessment tool and PEDro scale were used to assess the risks of bias and methodological quality of the studies. The results were analyzed using narrative and quantitative syntheses. RESULT: Eleven articles from nine studies (n=550) were included in the study. The results showed that, only global cognitive function (SMD = 0.72, 95% CI = 0.19-1.25, p=0.007), neuropsychiatric symptom (MD = -5.28, 95% CI =-6.22 to -4.34, p<0.0001) and ADL (SMD =3.12, 95% CI =0.11-6.13, p=0.04) improved significantly higher in the experimental group post-intervention. At follow-up, the significant difference was maintained only in neuropsychiatric symptoms (MD =-6.20, 95% CI =-7.17 to -5.23, p<0.0001). CONCLUSION: There is a low evidence on the effects of home-based physical activity or exercise on global cognitive function, neuropsychiatric symptoms and ADL.

Real World Financial Mismanagement in Alzheimer's Disease, Frontotemporal Dementia, and Primary Progressive Aphasia.

Background: Whereas clinical experience in dementia indicates high risk for financial mismanagement, there has been little formal study of real world financial errors in dementia. Objective: We aimed to compare caregiver-reported financial mistakes among people with Alzheimer's disease, behavioral variant frontotemporal dementia (bvFTD), and primary progressive aphasia (PPA). Methods: Caregivers reported whether participants with dementia had made financial mistakes within the last year; and if so, categorized these as resulting from: (a) being too trusting or gullible, (b) being wasteful or careless with money, or (c) trouble with memory. In a pre-registered analysis https://archive.org/details/osf-registrations-vupj7-v1), we examined the hypotheses that (1) financial mistakes due to impaired socioemotional function and diminished sensitivity to negative outcomes are more prevalent in bvFTD than in Alzheimer's disease, and (2) financial mistakes due to memory are more prevalent in Alzheimer's disease than in bvFTD. Exploratory analyses addressed vulnerability in PPA and brain-behavior relationships using voxel-based morphometry. Results: Concordant with our first hypothesis, bvFTD was more strongly associated than Alzheimer's disease with mistakes due to being too trusting/gullible or wasteful/careless; contrary to our second hypothesis, both groups were similarly likely to make mistakes due to memory. No differences were found between Alzheimer's disease and PPA. Exploratory analyses indicated associations between financial errors and atrophy in right prefrontal and insular cortex. Conclusions: Our findings cohere with documented socioemotional and valuation impairments in bvFTD, and with research indicating comparable memory impairment between bvFTD and Alzheimer's disease.

Surgical outcomes and healthcare expenditures among patients with dementia undergoing major surgery.

BACKGROUND: We sought to define surgical outcomes among elderly patients with Alzheimer's disease and related dementias (ADRD) following major thoracic and gastrointestinal surgery. METHODS: A retrospective cohort study was used to identify patients who underwent coronary artery bypass grafting (CABG), abdominal aortic aneurysm (AAA) repair, pneumonectomy, pancreatectomy, and colectomy. Individuals were identified from the Medicare Standard Analytic Files and multivariable regression was utilized to assess the association of ADRD with textbook outcome (TO), expenditures, and discharge disposition. RESULTS: Among 1,175,010 Medicare beneficiaries, 19,406 (1.7%) patients had a preoperative diagnosis of ADRD (CABG: n = 1,643, 8.5%; AAA repair: n = 5,926, 30.5%; pneumonectomy: n = 590, 3.0%; pancreatectomy: n = 181, 0.9%; and colectomy: n = 11,066, 57.0%). After propensity score matching, patients with ADRD were less likely to achieve a TO (ADRD: 31.2% vs. no ADRD: 40.1%) or be discharged to home (ADRD: 26.7% vs. no ADRD: 46.2%) versus patients who did not have ADRD (both p < 0.001). Median index surgery expenditures were higher among patients with ADRD (ADRD: $28,815 [IQR $14,333-$39,273] vs. no ADRD: $27,101 [IQR $13,433-$38,578]; p < 0.001) (p < 0.001). On multivariable analysis, patients with ADRD had higher odds of postoperative complications (OR 1.32, 95% CI 1.25-1.40), extended length-of-stay (OR 1.26, 95% CI 1.21-1.32), 90-day readmission (OR 1.37, 95% CI 1.31-1.43), and 90-day mortality (OR 1.76, 95% CI 1.66-1.86) (all p < 0.001). CONCLUSION: Preoperative diagnosis of ADRD was an independent risk factor for poor postoperative outcomes, discharge to non-home settings, as well as higher healthcare expenditures. These data should serve to inform discussions and decision-making about surgery among the growing number of older patients with cognitive deficits.

Evaluation of the Cost-effectiveness of Drug Treatment for Alzheimer Disease in a Simulation Model That Includes Caregiver and Societal Factors.

Importance: The possibility of widespread use of a novel effective therapy for Alzheimer disease (AD) will present important clinical, policy, and financial challenges. Objective: To describe how including different patient, caregiver, and societal treatment-related factors affects estimates of the cost-effectiveness of a hypothetical disease-modifying AD treatment. Design, Setting, and Participants: In this economic evaluation, the Alzheimer Disease Archimedes Condition Event Simulator was used to simulate the prognosis of a hypothetical cohort of patients selected from the Alzheimer Disease Neuroimaging Initiative database who received the diagnosis of mild cognitive impairment (MCI). Scenario analyses that varied costs and quality of life inputs relevant to patients and caregivers were conducted. The analysis was designed and conducted from June 15, 2019, to September 30, 2020. Exposures: A hypothetical drug that would delay progression to dementia in individuals with MCI compared with usual care. Main Outcomes and Measures: Incremental cost-effectiveness ratio (ICER), measured by cost per quality-adjusted life-year (QALY) gained. Results: The model included a simulated cohort of patients who scored between 24 and 30 on the Mini-Mental State Examination and had a global Clinical Dementia Rating scale of 0.5, with a required memory box score of 0.5 or higher, at baseline. Using a health care sector perspective, which included only individual patient health care costs, the ICER for the hypothetical treatment was $192 000 per QALY gained. The result decreased to $183 000 per QALY gained in a traditional societal perspective analysis with the inclusion of patient non-health care costs. The inclusion of estimated caregiver health care costs produced almost no change in the ICER, but the inclusion of QALYs gained by caregivers led to a substantial reduction in the ICER for the hypothetical treatment, to $107 000 per QALY gained in the health sector perspective. In the societal perspective scenario, with the broadest inclusion of patient and caregiver factors, the ICER decreased to $74 000 per added QALY. Conclusions and Relevance: The findings of this economic evaluation suggest that policy makers should be aware that efforts to estimate and include the effects of AD treatments outside those on patients themselves can affect the results of the cost-effectiveness analyses that often underpin assessments of the value of new treatments. Further research and debate on including these factors in assessments that will inform discussions on fair pricing for new treatments are needed.

Medical Care and Long-Term Care Expenditures Attributable to Alzheimer's Disease Onset: Results from the LIFE Study.

BACKGROUND: Alzheimer's disease (AD) can increase both medical care and long-term care (LTC) costs, but the latter are frequently neglected in estimates of AD's economic burden. OBJECTIVE: To elucidate the economic burden of new AD cases in Japan by estimating patient-level medical care and LTC expenditures over 3 years using a longitudinal database. METHODS: The study was performed using monthly claims data from residents of 6 municipalities in Japan. We identified patients with new AD diagnoses between April 2015 and March 2016 with 3 years of follow-up data. Medical care and LTC expenditures were estimated from 1 year before onset until 3 years after onset. To quantify the additional AD-attributable expenditures, AD patients were matched with non-AD controls using propensity scores, and their differences in expenditures were calculated. RESULTS: After propensity score matching, the AD group and non-AD group each comprised 1748 individuals for analysis (AD group: mean age±standard deviation, 81.9±7.6 years; women, 66.0%). The total additional expenditures peaked at $1398 in the first month, followed by $1192 and $1031 in the second and third months, respectively. The additional LTC expenditures increased substantially 3 months after AD onset ($227), and gradually increased thereafter. These additional LTC expenditures eventually exceeded the additional medical care expenditures in the second year after AD onset. CONCLUSION: Although total AD-attributable expenditures peaked just after disease onset, the impact of LTC on these expenditures rose over time. Failure to include LTC expenditures would severely underestimate the economic burden of AD.

Impact of dementia: Health disparities, population trends, care interventions, and economic costs.

INTRODUCTION: The dementia experience is not a monolithic phenomenon-and while core elements of dementia are considered universal-people living with dementia experience the disorder differently. Understanding the patterning of Alzheimer's disease and related dementias (ADRD) in the population with regards to incidence, risk factors, impacts on dementia care, and economic costs associated with ADRD can provide clues to target risk and protective factors for all populations as well as addressing health disparities. METHODS: We discuss information presented at the 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, Theme 1: Impact of Dementia. In this article, we describe select population trends, care interventions, and economic impacts, health disparities and implications for future research from the perspective of our diverse panel comprised of academic stakeholders, and persons living with dementia, and care partners. RESULTS: Dementia incidence is decreasing yet the advances in population health are uneven. Studies examining the educational, geographic and race/ethnic distribution of ADRD have identified clear disparities. Disparities in health and healthcare may be amplified by significant gaps in the evidence base for pharmacological and non-pharmacological interventions. The economic costs for persons living with dementia and the value of family care partners' time are high, and may persist into future generations. CONCLUSIONS: Significant research gaps remain. Ensuring that ADRD healthcare services and long-term care services and supports are accessible, affordable, and effective for all segments of our population is essential for health equity. Policy-level interventions are in short supply to redress broad unmet needs and systemic sources of disparities. Whole of society challenges demand research producing whole of society solutions. The urgency, complexity, and scale merit a "whole of government" approach involving collaboration across numerous federal agencies.

Major Cost Drivers in Assessing the Economic Burden of Alzheimer's Disease: A Structured, Rapid Review.

BACKGROUND: Alzheimer's Disease is the most common cause of dementia, affecting memory, thinking and behavior. Symptoms eventually grow severe enough to interfere with daily tasks. AD is predicted to increase healthcare spending and costs associated with formal and informal caregiving. The aim of this study was to identify and quantify the contribution of the different cost components associated with AD. METHODS: A structured literature review was conducted to identify studies reporting the economic burden of Alzheimer`s Disease beyond the healthcare setting. The search was conducted in Medline, Embase and EconLit and limited to studies published in the last 10 years. For each identified cost component, frequency weighted mean costs were calculated across countries to estimate the percentage contribution of each component by care setting and disease severity. Results obtained by each costing approach were also compared. RESULTS: For community-dwelling adults, the percentage of healthcare, social care and indirect costs to total costs were 13.9%, 17.4% and 68.7%, respectively. The percentage of costs varied by disease severity with 26.0% and 10.4% of costs spent on healthcare for mild and severe disease, respectively. The proportion of total spending on indirect costs changed from 60.7% to 72.5% as disease progressed. For those in residential care, the contribution of each cost component was similar between moderate and severe disease. Social care accounted on average for 85.9% of total costs. CONCLUSION: The contribution of healthcare costs to the overall burden was not negligible; but was generally exceeded by social and informal care costs.

Determinants of Medical Direct Costs of Care among Patients of a Memory Center.

BACKGROUND: Alzheimer's disease and related diseases (ADRD) are a major cause of health-related cost increase. OBJECTIVES: This study aimed to estimate the real medical direct costs of care of patients followed at a memory center, and to investigate potential associations between patients' characteristics and costs. DESIGN: Cross-sectional analyses conducted on matched data between clinical data of a cohort of patients and the claims database of the French Primary Health Insurance Fund. SETTING: Memory center in France. PARTICIPANTS: Patients attending a memory center with subjective cognitive complaint. MEASUREMENTS: Medical or nonmedical direct costs (transportation) reimbursed by the French health insurance during the one year after the first memory visit, and socio-demographic, clinical, cognitive, functional, and behavioral characteristics were analyzed. RESULTS: Among 2,746 patients (mean ± SD age 79.9 ± 8 years, 42.4% of patients with dementia), the total direct cost was on average € 9,885 per patient during the year after the first memory visit: € 7,897 for patients with subjective cognitive complaint, € 9,600 for patients with MCI, and € 11,505 for patients with dementia. A higher functional and cognitive impairment, greater behavioral disorders, and a higher caregiver burden were independently associated with a higher total direct cost. A one-point decrease in the Instrumental Activities of Daily Living score was associated with a € 1,211 cost increase. The cost was higher in patients with Parkinson's disease, and Lewy body disease compared to patients with AD. Diabetes mellitus, anxiety disorders and number of drugs were also significantly associated with greater costs. CONCLUSIONS: Higher real medical direct costs were independently associated with cognitive, functional, and behavioral impairment, diabetes mellitus, anxiety disorders, number of drugs, etiologies as well as caregiver burden in patients attending a memory center. The identification of factors associated to higher direct costs of care offers additional direct targets to evaluate how interventions conducted in patients with NCD impact direct costs of care.

The promise of crowdfunding to finance R&D of novel diagnostics and therapeutics for incurable diseases.

The level of funding available for research and development (R&D) of diagnostics (D) and therapeutics (T) for incurable diseases varies and is not associated with the extent of their disease burden. Crowdfunding is a promising way to increase funding for R&D of D&T for underfunded incurable diseases, such as Alzheimer's and Parkinson's disease, which has not been exploited to its full capacity. Investing into efforts to educate patients and researchers about its prospective is a worthwhile endeavor, which could lead to the generation of substantial new capital to finance the development of novel therapeutics for these diseases.

2021 Alzheimer's disease facts and figures.

This article describes the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality and morbidity, use and costs of care, and the overall impact on caregivers and society. The Special Report discusses the challenges of providing equitable health care for people with dementia in the United States. An estimated 6.2 million Americans age 65 and older are living with Alzheimer's dementia today. This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure AD. Official death certificates recorded 121,499 deaths from AD in 2019, the latest year for which data are available, making Alzheimer's the sixth-leading cause of death in the United States and the fifth-leading cause of death among Americans age 65 and older. Between 2000 and 2019, deaths from stroke, heart disease and HIV decreased, whereas reported deaths from AD increased more than 145%. This trajectory of deaths from AD was likely exacerbated in 2020 by the COVID-19 pandemic. More than 11 million family members and other unpaid caregivers provided an estimated 15.3 billion hours of care to people with Alzheimer's or other dementias in 2020. These figures reflect a decline in the number of caregivers compared with a decade earlier, as well as an increase in the amount of care provided by each remaining caregiver. Unpaid dementia caregiving was valued at $256.7 billion in 2020. Its costs, however, extend to family caregivers' increased risk for emotional distress and negative mental and physical health outcomes - costs that have been aggravated by COVID-19. Average per-person Medicare payments for services to beneficiaries age 65 and older with AD or other dementias are more than three times as great as payments for beneficiaries without these conditions, and Medicaid payments are more than 23 times as great. Total payments in 2021 for health care, long-term care and hospice services for people age 65 and older with dementia are estimated to be $355 billion. Despite years of efforts to make health care more equitable in the United States, racial and ethnic disparities remain - both in terms of health disparities, which involve differences in the burden of illness, and health care disparities, which involve differences in the ability to use health care services. Blacks, Hispanics, Asian Americans and Native Americans continue to have a higher burden of illness and lower access to health care compared with Whites. Such disparities, which have become more apparent during COVID-19, extend to dementia care. Surveys commissioned by the Alzheimer's Association recently shed new light on the role of discrimination in dementia care, the varying levels of trust between racial and ethnic groups in medical research, and the differences between groups in their levels of concern about and awareness of Alzheimer's disease. These findings emphasize the need to increase racial and ethnic diversity in both the dementia care workforce and in Alzheimer's clinical trials.