Review of the 2024 Literature on the Economics of Alzheimer’s Disease and Alzheimer’s Disease Related Dementias

This targeted review of the literature in the economics of Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) consisted of 33 impactful articles from 2024. A searchable database of each article, including its key results, cohort information, and related Coordinating Center research priorities, can be found here. Caregiving was the most commonly discussed topic within the literature, with a large focus on the financial impacts of informal care. A variety of estimates on the costs of AD/ADRD were found in this review, and multiple studies estimated that the global cost of dementia would be in the trillions of dollars by 2050. Lastly, studies found some association between increased socioeconomic status and increased cognitive health. 

Caregiving

Many people living with dementia are primarily cared for by spouses, children, or friends. This type of unpaid or informal care is extremely common, with one of the studies finding that almost all people living with dementia (PLWD) who receive any sort of care receive at least some informal care [1]. When informal care is stratified by race or ethnicity, White PLWD were more likely to receive care from a spouse, with Black and Hispanic PLWD more likely to receive care from adult children [2]. This type of informal care was the focus for many of the articles within this section. A subsection of these articles focused on quantifying caregiver burden. A study by Kojima et al. comparing the caregivers of individuals with stroke, AD/ADRD, depression, or schizophrenia in Japan found that caregivers had a lower quality of life (QoL), greater health resource utilization, higher economic burden, and higher prevalence of depression than non-caregivers [3]. Another study by Monfared et al. found that AD/ADRD severity was negatively correlated with caregiver’s QoL [4]. However, a study by Ingraham et al. found no significant difference between Medicare Part A and B expenditures for the spouses of people with or without dementia in the five years after onset, with the authors attributing this finding to improved diagnostics identifying dementia earlier [5]. When investigating which type of adult children were most impacted by parental AD/ADRD, Stokes et al. found that adult daughters with a low education level were most likely to be burdened, with a higher likelihood of providing informal care while still working [6]. 

Informal caregiving can have a significant impact on the caregiver’s finances. This sort of information can be challenging to capture, but Dawson et al. determined that web-based weekly surveys was an efficient way to longitudinally capture the financial and time costs of caregiving, finding that almost all caregivers reported some type of out-of-pocket costs [7]. A study focused on Latino family caregivers found that these day-to-day expenses not covered by insurance added up over time, resulting in psychological stress [8]. Furthermore, caregivers reported feeling the least confident in knowing what tax deductions are available to them, what government programs can offer financial assistance, and what to do when they do not have enough money to provide care [9]. 

Healthcare and Payment Policy

PLWD and other older adults often require significant medical care by paid providers. Four of the articles specifically looked at the dementia care workforce. A study by Liu et al. used Census data to explore how dementia specialist density varied by region. More than half of the hospital referral regions within the United States had fewer dementia specialists than was needed to adequately care for people living with dementia (PLWD) in the area, with rural areas having the largest shortage [10]. Having an adequate dementia care workforce is particularly important; two of the studies investigated how staffing levels influence patient outcomes at nursing homes. The studies by Mukamel et al. and Kosar et al. found that increased registered nurses/certified nursing assistant hours per resident per day and staffing star ratings improved patient outcomes [11], [12]. Another study by Kosar et al. investigated how nurse practitioner (NP) care and scope of policy impacted nursing home patients’ outcomes, with patients who received more extensive NP care having lower hospitalization rates and higher hospice use in the last 30 days of life [13]. People with AD/ADRD who stayed in a skilled nursing facility following hospitalization had a shorter length of stay if they were cared for by an Accountable Care Organization, an interdisciplinary group of providers who provide coordinated care [14]. Due to the cognitive impact of AD/ADRD, surrogates, who are often family members of the patient, eventually are needed to make treatment decisions for these patients. A study by Nicholas et al. found that surrogates are more likely to choose comfort care over life-extending treatment for those with dementia, even if that is against patient preferences. However, surrogates were likely to follow patient preferences when the surrogate’s own treatment preferences aligned with that of the patient [15]. 

Long-term Services and Supports

Long-term services and supports are important resources that care for PLWD that can be heavily impacted by payers and policy. Following the Center for Medicare and Medicaid Services’ National Partnership to Improve Dementia Care in Nursing Homes, which restricted antipsychotic use with the exception of those with exclusionary diagnoses, Shireman et al. determined that the new policy increased the number of exclusionary diagnoses in for-profit nursing homes specifically [16]. Relatedly, for-profit hospice enrollees were more likely to have had a recent nursing home stay and an AD/ADRD diagnosis, along with these enrollees have a longer lifetime length of stay than nonprofit hospice enrollees [17]. Wang et al. investigated Medicare-funded home and community-based services (HCBS), finding that increased Medicare HCBS availability was associated with the choice for home-based over institutional post-acute care [18]. Telehealth is another way of receiving care at home, and the COVID-19 Pandemic increased its availability. Residential long-term care usage reduced during the pandemic and did not recover to previous rates, and states with greater increases in telehealth and office visits had smaller increases in excess deaths and greater declines in inpatient and emergency department visits [19]. 

Cost of Care

Estimating the cost of AD/ADRD, including aspects like the cost of both formal and informal care and forgone wages, is challenging. Three articles used the Global Burden of Disease 2019 study to make cross-national estimates on AD/ADRD burden and cost of care. One article specifically used this information, in conjunction with the results from a systematic review, to estimate the global cost of dementia with informal care, estimating about $600 billion in 2019 and projecting the cost would rise to $2 trillion by 2050 [20]. Another study compared a status quo macroeconomic model to one where AD/ADRD is eliminated, projecting that AD/ADRD will have a global cost of $14 trillion from 2020 to 2050 [21]. When comparing the age-standardized death rate from AD/ADRD across countries, Cui et al. found that the rate was rising in all countries and rising most rapidly in low sociodemographic index countries [22]. 

Focusing on the United States, one study estimated that in 2040 the direct cost of AD/ADRD would be $535 billion, total cost as forgone wages would be $833 billion, and total cost as replacement costs would be $1.3 trillion [23]. The specific cost associated with transitioning from major cognitive impairment (MCI) to AD/ADRD was 41% higher in the 12 months following MCI diagnosis than for individuals who had stable MCI [24]. A higher percentage of PLWD reported financial hardship than those with incident cancer, perhaps due to the progressive nature of dementia causing increased costs over time [25]. 

Health Disparities

The articles within this topic explored the relationship between cognitive health and socioeconomic wellbeing. Studies found an association between lower socioeconomic status or financial wellbeing (e.g., family income level, amount of wealth loss, etc.) to cognitive impairment in the United States and New Zealand [26], [27], [28], [29]. In a similar vein, Jeong et al. found that increased polygenic risk for AD/ADRD was associated with negative economic outcomes and lower cognitive function even in the absence of an AD/ADRD diagnosis [30]. Despite these outcomes and knowledge of risk, these individuals were less likely to financially plan [30]. A quasi-experimental study in rural South Africa found that increased pension eligibility, or cash transfers, was associated with increased cognitive function in men above the age of 40 years [31]. 

Other

One way of estimating the incidence and prevalence of AD/ADRD is by using Medicare claims data. Niznik et al. investigated methods for identifying dementia cases using either Medicare claims data or the Minimum Data Set, finding that using multiple indicators across data sources to create larger cohorts of dementia patients could result in including individuals with discordance information [32]. Lastly, a study by Rahman et al. found that patients with dementia were more likely to migrate across states and counties than patients with myocardial infarction, chronic obstructive pulmonary diseases, or colon cancer [33]. 

References

[1] B. C. Ingraham, D. Barthold, P. Fishman, and N. B. Coe, “Caregiving for dementia: trends pre-post onset and predictive factors of family caregiving (2002-2018),” Health Affairs Scholar, vol. 2, no. 3, p. qxae020, Mar. 2024, doi: 10.1093/haschl/qxae020. 

[2] P. Cantu, T.-C. Cho, M. Wyman, B. Helppie-McFall, and K. J. Ajrouch, “Racial and Ethnic Disparities in the Monetary Value of Informal Caregiving for Non-Institutionalized People Living With Dementia,” Journal of Aging and Health, vol. 36, no. 9, pp. 570–582, Oct. 2024, doi: 10.1177/08982643241262917. 

[3] Y. Kojima, S. Yamada, K. Kamijima, K. Kogushi, and S. Ikeda, “Burden in caregivers of patients with schizophrenia, depression, dementia, and stroke in Japan: comparative analysis of quality of life, work productivity, and qualitative caregiving burden,” BMC Psychiatry, vol. 24, no. 1, p. 591, Sep. 2024, doi: 10.1186/s12888-024-06000-x. 

[4] A. A. Tahami Monfared et al., “Assessing Quality of Life, Economic Burden, and Independence Across the Alzheimer’s Disease Continuum Using Patient-Caregiver Dyad Surveys,” Journal of Alzheimer’s Disease, vol. 99, no. 1, pp. 191–206, 2024, doi: 10.3233/JAD-231259. 

[5] B. C. Ingraham, D. Barthold, N. B. Coe, and P. Fishman, “Medicare expenditures among spouses of persons with dementia,” Journal of the American Geriatrics Society, vol. 72, no. 10, pp. 3200–3209, Oct. 2024, doi: 10.1111/jgs.19074. 

[6] J. E. Stokes, T. B. Kindratt, T. C. Antonucci, C. G. Cox, and H. Choi, “Employment Dynamics Among Adult Children at the Onset of Parental Dementia: Variation by Sociodemographic Characteristics,” Journal of Aging and Health, vol. 36, no. 9, pp. 546–558, Oct. 2024, doi: 10.1177/08982643231201547. 

[7] W. D. Dawson, N. Mattek, S. Gothard, J. Kaye, and A. Lindauer, “Ascertaining Out-of-Pocket Costs of Dementia Care: Feasibility Study of a Web-Based Weekly Survey,” JMIR Formative Research, vol. 8, p. e56878, Sep. 2024, doi: 10.2196/56878. 

[8] S. Mage et al., “‘I Lay Awake at Night’: Latino Family Caregivers’ Experiences Covering Out-of-Pocket Costs When Caring for Someone Living With Dementia,” The Gerontologist, vol. 64, no. 1, p. gnad011, Jan. 2024, doi: 10.1093/geront/gnad011. 

[9] A. Jolliff et al., “Exploring confidence in financial planning topics among care partners of persons living with dementia,” Dementia, vol. 23, no. 8, pp. 1307–1326, Nov. 2024, doi: 10.1177/14713012241270730. 

[10] J. L. Liu, L. Baker, A. Y.-A. Chen, and J. J. Wang, “Geographic variation in shortfalls of dementia specialists in the United States,” Health Affairs Scholar, vol. 2, no. 7, p. qxae088, Jul. 2024, doi: 10.1093/haschl/qxae088. 

[11] D. B. Mukamel, H. Ladd, D. Saliba, and R. T. Konetzka, “Dementia, nurse staffing, and health outcomes in nursing homes,” Health Services Research, vol. 59, no. 4, p. e14270, Aug. 2024, doi: 10.1111/1475-6773.14270. 

[12] C. M. Kosar, V. Mor, A. N. Trivedi, and M. Rahman, “Impact of skilled nursing facility quality on Medicare beneficiaries with dementia: Evidence from vacancies,” Alzheimer’s & Dementia, vol. 20, no. 12, pp. 8308–8316, Dec. 2024, doi: 10.1002/alz.14251. 

[13] C. M. Kosar et al., “Nurse Practitioner Care, Scope of Practice, and End-of-Life Outcomes for Nursing Home Residents With Dementia,” JAMA Health Forum, vol. 5, no. 5, p. e240825, May 2024, doi: 10.1001/jamahealthforum.2024.0825. 

[14] J. P. W. Bynum et al., “Accountable Care Organization Attribution and Post-Acute Skilled Nursing Facility Outcomes for People Living With Dementia,” Journal of the American Medical Directors Association, vol. 25, no. 1, pp. 53-57.e2, Jan. 2024, doi: 10.1016/j.jamda.2023.10.031. 

[15] L. H. Nicholas, K. M. Langa, S. D. Halpern, and M. Macis, “How do surrogates make treatment decisions for patients with dementia: An experimental survey study,” Health Economics, vol. 33, no. 6, pp. 1211–1228, Jun. 2024, doi: 10.1002/hec.4810. 

[16] T. I. Shireman et al., “Impact of federal antipsychotic use policy in nursing homes on new diagnoses for approved indications in dementia residents,” Journal of the American Geriatrics Society, vol. 72, no. 12, pp. 3742–3752, Dec. 2024, doi: 10.1111/jgs.19129. 

[17] D. A. Rosenkranz, L. White, C. Sun, K. E. M. Miller, and N. B. Coe, “Market segmentation by profit status: evidence from hospice,” Health Affairs Scholar, vol. 2, no. 12, p. qxae160, Dec. 2024, doi: 10.1093/haschl/qxae160. 

[18] S. Wang, R. M. Werner, N. B. Coe, R. Chua, M. Qi, and R. T. Konetzka, “The role of Medicaid home- and community-based services in use of Medicare post-acute care,” Health Services Research, vol. 59, no. 5, p. e14325, Oct. 2024, doi: 10.1111/1475-6773.14325. 

[19] K. Ghosh, S. T. Stewart, T. Raghunathan, and D. M. Cutler, “Medical visits and mortality among dementia patients during the COVID-19 pandemic compared to rates predicted from 2019,” BMC Geriatrics, vol. 24, no. 1, p. 727, Sep. 2024, doi: 10.1186/s12877-024-05298-2. 

[20] A. Lastuka et al., “Societal Costs of Dementia: 204 Countries, 2000-2019,” Journal of Alzheimer’s Disease, vol. 101, no. 1, pp. 277–292, 2024, doi: 10.3233/JAD-240163. 

[21] S. Chen et al., “The global macroeconomic burden of Alzheimer’s disease and other dementias: estimates and projections for 152 countries or territories,” The Lancet Global Health, vol. 12, no. 9, pp. e1534–e1543, Sep. 2024, doi: 10.1016/S2214-109X(24)00264-X. 

[22] Y. Cui, W. Yang, J. Shuai, Y. Ma, and Y. Yan, “Lifestyle and Socioeconomic Transition and Health Consequences of Alzheimer’s Disease and Other Dementias in Global, from 1990 to 2019,” Journal of Prevention of Alzheimer’s Disease, vol. 11, no. 1, pp. 88–96, 2024, doi: 10.14283/jpad.2023.63. 

[23] A. Nandi et al., “Cost of care for Alzheimer’s disease and related dementias in the United States: 2016 to 2060,” NPJ Aging, vol. 10, no. 1, p. 13, Feb. 2024, doi: 10.1038/s41514-024-00136-6. 

[24] F. H. Frech et al., “Economic Impact of Progression from Mild Cognitive Impairment to Alzheimer Disease in the United States,” Journal of Prevention of Alzheimer’s Disease, vol. 11, no. 4, pp. 983–991, 2024, doi: 10.14283/jpad.2024.68. 

[25] K. E. M. Miller, L. White, N. B. Coe, and N. Khandelwal, “Money may matter: Financial hardship and its association with satisfaction of care among people living with dementia,” Journal of the American Geriatrics Society, vol. 72, no. 4, pp. 1272–1274, Apr. 2024, doi: 10.1111/jgs.18723. 

[26] S. Mudrazija, J. Palms, J. H. Lee, A. Maher, L. B. Zahodne, and W. J. Chopik, “Preclinical Dementia and Economic Well-Being Trajectories of Racially Diverse Older Adults,” Journal of Aging and Health, vol. 36, no. 9, pp. 523–534, Oct. 2024, doi: 10.1177/08982643241237292. 

[27] A. C. Westrick, D. K. Esiaka, H. C. S. Meier, R. N. Rooks, M. Manning, and W. Tarraf, “Cognition and Wealth Changes in Mid-to-later Life: A Latent Class Trajectories Approach Using the Health and Retirement Study,” Journal of Aging and Health, vol. 36, no. 9, pp. 510–522, Oct. 2024, doi: 10.1177/08982643241232003. 

[28] M. Iskandar, J. Martindale, J. P. W. Bynum, and M. A. Davis, “Association between Family Household Income and Cognitive Resilience among Older US Adults: A Cross-Sectional Study,” Journal of Prevention of Alzheimer’s Disease, vol. 11, no. 5, pp. 1406–1409, 2024, doi: 10.14283/jpad.2024.97. 

[29] A. Reuben et al., “Dementia, dementia’s risk factors and premorbid brain structure are concentrated in disadvantaged areas: National register and birth-cohort geographic analyses,” Alzheimer’s & Dementia, vol. 20, no. 5, pp. 3167–3178, May 2024, doi: 10.1002/alz.13727. 

[30] Y. Jeong, N. W. Papageorge, M. Skira, and K. Thom, “Genetic Risk for Alzheimer’s Disease and Related Dementias: Cognition, Economic Behavior, and Actionable Information,” Mar. 2024, National Bureau of Economic Research: 32181. doi: 10.3386/w32181. 

[31] J. Jock et al., “Effects of Pension Eligibility Expansion on Men’s Cognitive Function: Findings from Rural South Africa,” Journal of Aging & Social Policy, vol. 36, no. 5, pp. 809–828, Sep. 2024, doi: 10.1080/08959420.2023.2195785. 

[32] J. D. Niznik et al., “A comparison of dementia diagnoses and cognitive function measures in Medicare claims and the Minimum Data Set,” Journal of the American Geriatrics Society, vol. 72, no. 8, pp. 2381–2390, Aug. 2024, doi: 10.1111/jgs.19019. 

[33] M. Rahman et al., “Patterns of Migration Following Dementia Diagnosis,” JAMA Network Open, vol. 7, no. 10, p. e2439499, Oct. 2024, doi: 10.1001/jamanetworkopen.2024.39499.