[
 {
  "metric": "Number of family and other unpaid caregivers of people with Alzheimer's or other dementias, US",
  "value": "12.7 million (12,734 thousand)",
  "population": "US adults 18+ providing unpaid care to someone with Alzheimer's/dementia",
  "year": 2025,
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MODELLED: The Alzheimer's Association built this estimate from state survey answers (the CDC's BRFSS caregiver questions), applied to July 2025 Census population counts. Caregivers whose person had dementia, but not as the main condition, were added using a ratio from a 2019 national caregiving survey (NAC/AARP). This figure comes from a survey-based model, not a direct count. The Association's web summary rounds it to 'nearly 13 million'."
 },
 {
  "metric": "Total hours of unpaid dementia care, US",
  "value": "19.6 billion hours (19.608 billion)",
  "population": "US unpaid dementia caregivers",
  "year": 2025,
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MODELLED: BRFSS weekly-hours categories (midpoint assumption) x caregiver counts by state, summed. Averages to ~30 hours per caregiver per week / 1,543 hours per year."
 },
 {
  "metric": "Economic value of unpaid dementia caregiving, US",
  "value": "$446.3 billion",
  "population": "US unpaid dementia caregivers",
  "year": 2025,
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MODELLED: hours valued at the average of state minimum wage and median hourly cost of a home health aide (described by the Association as conservative). 2025 dollars."
 },
 {
  "metric": "Average hours of unpaid care per dementia caregiver",
  "value": "~30 hours per week (1,543 hours per year)",
  "population": "US unpaid dementia caregivers",
  "year": 2025,
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MODELLED: Total hours divided by the number of caregivers. Both are model estimates, so this average is one too."
 },
 {
  "metric": "Share of all caregivers of older adults who care for someone with Alzheimer's or another dementia",
  "value": "48%",
  "population": "US caregivers of older adults",
  "year": "not stated (reported in 2026 edition)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey-based, cited from underlying study)."
 },
 {
  "metric": "Share of hours of help to older adults that come from family, friends or other unpaid caregivers",
  "value": "83%",
  "population": "US older adults with or without dementia",
  "year": "not stated (reported in 2026 edition)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey-based)."
 },
 {
  "metric": "Monthly hours of informal care received by adults 70+ with probable dementia vs cognitively normal",
  "value": "171 hours/month (probable dementia) vs 89 (cognitively impaired, no dementia) vs 66 (cognitively normal)",
  "population": "US adults age 70+ receiving informal care (Health and Retirement Study)",
  "year": 2010,
  "source_name": "Friedman, Shih, Langa et al., Health Affairs 2015 (PMID 26438738)",
  "source_url": "https://pubmed.ncbi.nlm.nih.gov/26438738/",
  "notes": "MEASURED (nationally representative survey). 3.6 million of the 5.5 million adults 70+ receiving informal care had cognitive impairment or probable dementia."
 },
 {
  "metric": "Share of family/unpaid caregivers of older adults and of caregiving hours attributable to people with dementia",
  "value": "one-third of caregivers; 41% of hours of help",
  "population": "US family/unpaid caregivers to noninstitutionalized adults 65+ (NHATS/NSOC 2011)",
  "year": 2011,
  "source_name": "Kasper, Freedman, Spillman et al., Health Affairs 2015 (PMID 26438739)",
  "source_url": "https://pubmed.ncbi.nlm.nih.gov/26438739/",
  "notes": "MEASURED (nationally representative). People with dementia are ~10% of older noninstitutionalized adults."
 },
 {
  "metric": "Average weekly hours of care among dementia caregivers, trend",
  "value": "45 hours/week (1999) rising to 48 hours/week (2015); non-dementia caregivers fell from 34 to 24",
  "population": "US dementia caregivers, national caregiving trend analysis",
  "year": "1999-2015",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (citing national trend analysis, ref 570)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey). Cited secondarily via Facts and Figures; primary study not loaded."
 },
 {
  "metric": "Monthly caregiving hours at dementia onset vs 8 years later",
  "value": "151 hours/month at outset to 283 hours/month eight years later (~5 to ~9 hours/day)",
  "population": "US people with dementia (longitudinal study cited in Facts and Figures)",
  "year": "not stated",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (ref 571-572)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (longitudinal cohort); secondary citation."
 },
 {
  "metric": "Average weekly hours of care, all family caregivers of adults",
  "value": "23.7 hours/week mean; 10 hours median; 21% provide 41+ hours/week",
  "population": "US caregivers of adults 18+ (n=1,392)",
  "year": 2020,
  "source_name": "Caregiving in the U.S. 2020 (National Alliance for Caregiving and AARP, full report PDF)",
  "source_url": "https://www.caregiving.org/wp-content/uploads/2021/01/full-report-caregiving-in-the-united-states-01-21.pdf",
  "notes": "MEASURED (national survey). Not dementia-specific. Co-residing caregivers: 37.4 hours/week vs 14.6 not living together. Answers above 98 hours a week were counted as 98, and 'constant care' was counted as 77 hours."
 },
 {
  "metric": "Family caregivers providing 40+ hours per week or constant care",
  "value": "28% (national); range 14% (Iowa) to 37% (Tennessee)",
  "population": "US family caregivers of adults and children (63 million)",
  "year": 2025,
  "source_name": "Caregiving in the US 2025: Caring Across States (NAC/AARP, October 2025)",
  "source_url": "https://www.caregivingintheus.org/app/uploads/2025/10/caregiving-in-the-us-2025-caring-across-states.doi_.10.26419-2fppi.00383.001-1.pdf",
  "notes": "MEASURED (state-representative survey). Highlights document gives 24% providing 40+ hours among caregivers of adults."
 },
 {
  "metric": "Number of family caregivers, US, all conditions",
  "value": "63 million adults (24% of adults); 59 million caring for adults",
  "population": "US adults 18+",
  "year": 2025,
  "source_name": "Caregiving in the US 2025: Report Highlights & Key Messages (NAC/AARP, July 2025)",
  "source_url": "https://www.caregiving.org/wp-content/uploads/2025/07/CGUS-2025-Toolkit-Highligts-and-Key-Messages_July-2025.pdf",
  "notes": "MEASURED (national survey estimate). Up from 43 million in 2015 (+20 million). Not dementia-specific."
 },
 {
  "metric": "Share of family caregivers whose care recipient has Alzheimer's/dementia",
  "value": "26% any dementia present; 11% dementia as main condition",
  "population": "US caregivers of adults 18+",
  "year": 2020,
  "source_name": "Caregiving in the U.S. 2020 (National Alliance for Caregiving and AARP, full report PDF)",
  "source_url": "https://www.caregiving.org/wp-content/uploads/2021/01/full-report-caregiving-in-the-united-states-01-21.pdf",
  "notes": "MEASURED (survey). 32% of those caring for someone 65+ report dementia present. The Alzheimer's Association uses this 26%/11% ratio to fill in state caregiver counts."
 },
 {
  "metric": "Prevalence of depression among caregivers of people with Alzheimer's disease (pooled)",
  "value": "34.0% depression; 43.6% anxiety; 27.2% psychotropic drug use",
  "population": "10,825 caregivers in 17 studies (global meta-analysis)",
  "year": 2015,
  "source_name": "Sallim et al., Journal of the American Medical Directors Association 2015 (PMID 26593303)",
  "source_url": "https://pubmed.ncbi.nlm.nih.gov/26593303/",
  "notes": "MEASURED (meta-analytic pooled prevalence). Odds of depression 1.53x in female caregivers, 2.51x in spousal caregivers."
 },
 {
  "metric": "Prevalence of depression among dementia caregivers (range across studies)",
  "value": "30% to 40%, vs 20% (schizophrenia caregivers) and 19% (stroke caregivers)",
  "population": "US dementia caregivers, multiple studies",
  "year": "not stated (reported 2026)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (multiple studies; secondary citation)."
 },
 {
  "metric": "Prevalence of anxiety among dementia caregivers",
  "value": "40% or more (vs 31% among stroke caregivers)",
  "population": "dementia caregivers (studies cited in Facts and Figures)",
  "year": "not stated (reported 2026)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED; secondary citation."
 },
 {
  "metric": "Dementia caregivers reporting depression or anxiety, US vs Japan vs 5 European countries",
  "value": "US 32.5% depression / 26% anxiety; Japan 16.8% / 12.9%; Europe (DE, IT, ES, FR, UK) 29.3% / 22.4%",
  "population": "dementia caregivers in 2018 National Health and Wellness Survey",
  "year": 2018,
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (ref 511)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey); secondary citation."
 },
 {
  "metric": "Dementia caregivers reporting high to very high emotional stress",
  "value": "59%",
  "population": "US dementia caregivers (Alzheimer's Association/NAC survey)",
  "year": "not stated (reported 2026)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://www.alz.org/alzheimers-dementia/facts-figures",
  "notes": "MEASURED (survey). Also on alz.org summary page. 38% report high to very high physical stress."
 },
 {
  "metric": "Percentage of dementia caregivers reporting depression, by state (BRFSS)",
  "value": "e.g., Alabama 30.9%, Alaska 27.7%, Arizona 26.5%, Arkansas 30.0%, California 18.6%, Colorado 32.9%, Connecticut 22.8% (Table 11 gives all states)",
  "population": "US dementia caregivers age 18+ responding to BRFSS caregiver module",
  "year": "2016-2024 (pooled)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189), Table 11",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (self-report survey, unadjusted). Full state table available in source; only first rows transcribed here."
 },
 {
  "metric": "Spousal dementia caregivers: odds of depression vs non-spouse dementia caregivers",
  "value": "2.5x higher odds",
  "population": "dementia caregivers (meta-analysis cited in Facts and Figures)",
  "year": "not stated",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (meta-analysis); consistent with Sallim 2015 OR 2.51."
 },
 {
  "metric": "All-cause mortality risk in strained spousal caregivers vs non-caregivers (Caregiver Health Effects Study)",
  "value": "RR 1.63 (95% CI 1.00-2.65) for caregivers reporting strain; RR 1.08 (0.61-1.90) for caregivers without strain",
  "population": "392 caregivers and 427 non-caregivers aged 66-96 living with spouses, 4 US communities; 4-year follow-up",
  "year": "1993-1998 (published 1999)",
  "source_name": "Schulz & Beach, JAMA 1999 (PMID 10605972)",
  "source_url": "https://pubmed.ncbi.nlm.nih.gov/10605972/",
  "notes": "MEASURED (prospective cohort). Not dementia-specific (disabled spouses of any cause). Widely cited '63% higher mortality' figure applies only to strained caregivers; lower CI bound is 1.00."
 },
 {
  "metric": "All-cause mortality in family caregivers vs propensity-matched non-caregivers (REGARDS)",
  "value": "HR 0.823 (95% CI 0.699-0.969): 18% lower death rate in caregivers; 7.5% vs 9.0% died over ~6 years",
  "population": "3,503 caregivers vs 3,503 matched non-caregivers aged 45+, national REGARDS cohort, 2003-2012",
  "year": "2003-2012 (published 2013)",
  "source_name": "Roth et al., American Journal of Epidemiology 2013 (PMID 24091890)",
  "source_url": "https://pubmed.ncbi.nlm.nih.gov/24091890/",
  "notes": "MEASURED (cohort). Contradicts Schulz 1999; no subgroup with elevated mortality found. Not dementia-specific."
 },
 {
  "metric": "All-cause mortality by caregiving strain (REGARDS caregivers)",
  "value": "High strain vs no strain HR 1.55 (P=0.02); high vs some strain HR 1.83 (P=0.001), 5-year follow-up",
  "population": "3,710 caregivers aged 45+ in REGARDS",
  "year": "published 2013",
  "source_name": "Perkins et al., Journals of Gerontology Series B 2013 (PMID 23033358)",
  "source_url": "https://pubmed.ncbi.nlm.nih.gov/23033358/",
  "notes": "MEASURED (cohort). Strain, not caregiving per se, is the mortality risk factor. Not dementia-specific."
 },
 {
  "metric": "Dementia caregiver mortality vs non-caregivers (Health and Retirement Study)",
  "value": "Dementia caregivers less likely to die than non-caregivers of similar age over 12 years (protective association); 18% of spousal caregivers die before their partner with dementia",
  "population": "US HRS dementia caregivers",
  "year": "not stated (reported 2026)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (refs 655, 659)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (longitudinal survey); secondary citation. Facts and Figures characterizes mortality evidence as mixed."
 },
 {
  "metric": "Spousal dementia caregivers: odds of becoming increasingly frail",
  "value": "41% higher odds vs other spousal caregivers of similar age",
  "population": "US spousal caregivers (Health and Retirement Study)",
  "year": "not stated",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (ref 641)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED; secondary citation."
 },
 {
  "metric": "Dementia caregivers: odds of hospitalization and ED use",
  "value": "2x odds of hospitalization vs non-caregivers; ~5 ED visits per 100 months vs 3.5 for age-matched controls",
  "population": "US dementia caregivers (studies cited refs 650, 652)",
  "year": "not stated",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED; secondary citations."
 },
 {
  "metric": "Chronic conditions: dementia caregivers vs non-dementia caregivers vs non-caregivers (BRFSS, unadjusted)",
  "value": "Cancer 18.4% vs 14.3% vs 11.8%; coronary heart disease 8.6% vs 7.2% vs 6.4%; diabetes 13.3% vs 12.7% vs 11.7%; stroke 4.1% vs 3.8% vs 3.3%; obesity 37.0% vs 38.6% vs 38.2%",
  "population": "US adults 18+ in BRFSS caregiver module",
  "year": "not stated (Table 12, 2026 edition)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189), Table 12",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (self-report; unadjusted for age, so differences partly reflect older caregiver age)."
 },
 {
  "metric": "Sleep loss in dementia caregivers vs age-matched non-caregivers (meta-analysis)",
  "value": "Sleep duration Hedges g -0.29 (95% CI -0.48 to -0.09), equivalent to losing 2.42-3.50 hours per week; sleep quality g -0.66 (95% CI -0.89 to -0.42)",
  "population": "3,268 dementia caregivers in 35 studies (mean age 63.5; 76.7% female)",
  "year": "studies through June 2018 (published 2019)",
  "source_name": "Gao, Chapagain & Scullin, JAMA Network Open 2019 (PMID 31441938)",
  "source_url": "https://pubmed.ncbi.nlm.nih.gov/31441938/",
  "notes": "MEASURED (meta-analysis of polysomnography, actigraphy and self-report). Caregivers in sleep-intervention trials had better sleep quality (g 0.35, 95% CI 0.20-0.49)."
 },
 {
  "metric": "Dementia caregivers' odds of reporting excellent/very good sleep quality",
  "value": "23% lower odds vs same-age non-caregivers",
  "population": "US dementia caregivers",
  "year": "not stated (reported 2026)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (refs 639-640)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED; secondary citation."
 },
 {
  "metric": "Average annual out-of-pocket costs borne by dementia caregivers vs non-dementia caregivers",
  "value": "$12,388 vs $6,667 (nearly twice)",
  "population": "US family caregivers",
  "year": 2021,
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (refs 579, 661)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey-based estimate); secondary citation."
 },
 {
  "metric": "Out-of-pocket spending in last 5 years of life, dementia vs non-dementia decedents",
  "value": "Mean $61,522 vs $34,068 (81% higher); median $36,919 = 32% of household wealth measured 5 years before death vs 11% for non-dementia; 84% of wealth for Black decedents, 48% for less than high school education, 58% for unmarried/widowed women",
  "population": "1,702 Medicare fee-for-service decedents age 70+ in the Health and Retirement Study, died 2005-2010",
  "year": "2005-2010 (published 2015)",
  "source_name": "Kelley et al., Annals of Internal Medicine 2015 (PMID 26502320)",
  "source_url": "https://pubmed.ncbi.nlm.nih.gov/26502320/",
  "notes": "MEASURED: Out-of-pocket costs were measured. The Medicaid, private insurance and informal care parts were estimated by the study, not measured. Total social cost per dementia decedent $287,038 vs $175,136 (heart disease) and $173,383 (cancer). Dollar year per paper (not restated in abstract)."
 },
 {
  "metric": "Lifetime cost of dementia care and share borne by families",
  "value": "$321,780 total (2015 dollars) from diagnosis at mean age 83; families incur 70% ($225,140); Medicaid 14%; Medicare 16%; incremental cost vs no dementia $184,500 (86% borne by families)",
  "population": "simulated representative US incident dementia cases",
  "year": "2015 dollars (published 2017)",
  "source_name": "Jutkowitz et al., Journal of the American Geriatrics Society 2017 (PMID 28815557)",
  "source_url": "https://pubmed.ncbi.nlm.nih.gov/28815557/",
  "notes": "MODELLED (evidence-based microsimulation). Basis for the '70% borne by families' statistic."
 },
 {
  "metric": "Lifetime cost of care for a person with dementia (updated)",
  "value": "$405,262 (2024 dollars); 70% borne by family caregivers via unpaid care and out-of-pocket expenses",
  "population": "US person living with dementia",
  "year": 2024,
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (ref 578)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MODELLED (inflation-updated simulation estimate)."
 },
 {
  "metric": "Care contributors cutting back spending or savings because of dementia out-of-pocket costs",
  "value": "48% cut back on other spending; 43% cut back on savings; ~40% reported food bought 'just didn't last'; ~30% ate less",
  "population": "US 'care contributors' (paid for expenses and/or provided care at least monthly)",
  "year": "not stated (Alzheimer's Association survey cited ref 664)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (national survey); secondary citation."
 },
 {
  "metric": "Dementia caregivers experiencing financial 'toxicity'",
  "value": "over half",
  "population": "US dementia caregivers",
  "year": "not stated",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (ref 665)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey); secondary citation. Defined as negative effects of medical expenses on financial security and HRQoL."
 },
 {
  "metric": "Caregivers reporting high financial strain (all conditions)",
  "value": "18% high strain (mean 2.2 of 5); 31% among those providing 21+ hours/week vs 13% for fewer hours; 25% among co-residing caregivers",
  "population": "US caregivers of adults 18+",
  "year": 2020,
  "source_name": "Caregiving in the U.S. 2020 (National Alliance for Caregiving and AARP, full report PDF)",
  "source_url": "https://www.caregiving.org/wp-content/uploads/2021/01/full-report-caregiving-in-the-united-states-01-21.pdf",
  "notes": "MEASURED (survey). Not dementia-specific."
 },
 {
  "metric": "Family caregivers experiencing at least one negative financial impact",
  "value": "48% nationally (range 34% Minnesota to 59% Georgia); 47% in national highlights; ~25% taking on more debt",
  "population": "US family caregivers (63 million)",
  "year": 2025,
  "source_name": "Caregiving in the US 2025: Caring Across States (NAC/AARP, October 2025) and Caregiving in the US 2025: Report Highlights & Key Messages (NAC/AARP, July 2025)",
  "source_url": "https://www.caregivingintheus.org/app/uploads/2025/10/caregiving-in-the-us-2025-caring-across-states.doi_.10.26419-2fppi.00383.001-1.pdf",
  "notes": "MEASURED (state-representative survey). Highlights document says financial impacts are 'particularly pronounced for Black, Latino, and rural caregivers' (no numbers on loaded page)."
 },
 {
  "metric": "Share of dementia caregivers with household income of $50,000 or less",
  "value": "41%",
  "population": "US dementia caregivers",
  "year": "not stated (Alzheimer's Association/NAC survey, reported 2026)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189), Table 9",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey)."
 },
 {
  "metric": "Dementia caregivers reporting problems with a bank or credit union when managing the person's finances",
  "value": "22% vs 9% of non-dementia caregivers",
  "population": "US caregivers",
  "year": "not stated (ref 495)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey); secondary citation."
 },
 {
  "metric": "Dementia caregivers employed while caregiving",
  "value": "6 in 10 employed or had been employed while caregiving in prior year; worked an average of 35 hours/week",
  "population": "US dementia caregivers (NAC/Alzheimer's Association survey, ref 495)",
  "year": "not stated (reported 2026)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey)."
 },
 {
  "metric": "Work-related changes among employed dementia caregivers vs non-dementia caregivers",
  "value": "57% sometimes went in late/left early (vs 47%); 18% reduced work hours (vs 13%)",
  "population": "US caregivers employed in past year",
  "year": "not stated (reported 2026)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (Figure 13, ref 495)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey). Figure 13 contains additional categories not transcribed in the text."
 },
 {
  "metric": "Work impacts among working caregivers (all conditions)",
  "value": "61% any impact; 53% go in late/leave early/take time off; 15% reduced hours or went part-time; 14% leave of absence; 8% performance warning; 7% turned down promotion; 6% gave up working entirely; 5% retired early; 4% lost job benefits",
  "population": "US working caregivers of adults 18+ (n=837)",
  "year": 2020,
  "source_name": "Caregiving in the U.S. 2020 (National Alliance for Caregiving and AARP, full report PDF), Figure 69",
  "source_url": "https://www.caregiving.org/wp-content/uploads/2021/01/full-report-caregiving-in-the-united-states-01-21.pdf",
  "notes": "MEASURED (survey). Not dementia-specific. High-intensity caregivers: 73% had at least one impact."
 },
 {
  "metric": "Working caregivers reporting work-life impacted by caregiving; access to paid leave",
  "value": "61% report work impacted; 7 in 10 working-age caregivers employed; 50% of working caregivers have access to paid leave (up 56% from 2015)",
  "population": "US family caregivers",
  "year": 2025,
  "source_name": "Caregiving in the US 2025: Report Highlights & Key Messages (NAC/AARP, July 2025)",
  "source_url": "https://www.caregiving.org/wp-content/uploads/2025/07/CGUS-2025-Toolkit-Highligts-and-Key-Messages_July-2025.pdf",
  "notes": "MEASURED (survey). Not dementia-specific. Share employed: 60% nationally, range 42% (Arizona) to 76% (Connecticut) per state report."
 },
 {
  "metric": "Dementia caregivers absent from work in past 7 days due to a health problem",
  "value": "~13% US vs 6% Japan vs 10% across France, Germany, Italy, Spain, UK",
  "population": "dementia caregivers, 2018 National Health and Wellness Survey",
  "year": 2018,
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (ref 511)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey); secondary citation."
 },
 {
  "metric": "CMS GUIDE Model: launch date and duration",
  "value": "Began July 1, 2024; runs 8 years (performance years through June 2032)",
  "population": "Medicare fee-for-service beneficiaries with dementia and their caregivers",
  "year": 2024,
  "source_name": "CMS Innovation Center GUIDE Model page and Model Overview Fact Sheet",
  "source_url": "https://www.cms.gov/priorities/innovation/innovation-models/guide",
  "notes": "Official program description. Established Program Track delivered services from July 1, 2024; New Program Track had a pre-implementation year and began services July 1, 2025."
 },
 {
  "metric": "CMS GUIDE Model: respite services benefit",
  "value": "Up to $2,500 per eligible patient per year for in-home care, adult day center programs and facility-based respite",
  "population": "qualifying caregivers of GUIDE-aligned beneficiaries",
  "year": 2024,
  "source_name": "CMS Innovation Center GUIDE Model page",
  "source_url": "https://www.cms.gov/priorities/innovation/innovation-models/guide",
  "notes": "Official program parameter. Respite is 'not currently a Medicare-covered service outside of the hospice benefit' (fact sheet)."
 },
 {
  "metric": "CMS GUIDE Model: payment structure",
  "value": "Tiered monthly per-beneficiary dementia care management payment (adjusted by patient complexity and caregiver burden and by quality performance); respite payment; one-time lump-sum infrastructure payment to safety-net providers in New Program Track",
  "population": "GUIDE participants (Medicare Part B enrolled providers/suppliers)",
  "year": 2024,
  "source_name": "CMS GUIDE Model Overview Fact Sheet (PDF)",
  "source_url": "https://www.cms.gov/files/document/guide-model-overview-fs.pdf",
  "notes": "Official. Five patient tiers: with caregiver - low complexity (mild dementia), moderate complexity (moderate/severe dementia, low-moderate caregiver strain), high complexity (moderate/severe dementia, high caregiver strain); without caregiver - low complexity (mild) and moderate-to-high complexity (moderate/severe). Dollar amounts of PBPM payments not on loaded pages."
 },
 {
  "metric": "CMS GUIDE Model: required care delivery components",
  "value": "Interdisciplinary care team; care navigator; 24/7 support line; caregiver training/education and support; screening for psychosocial and health-related social needs with community referrals; comprehensive assessment and care plan",
  "population": "GUIDE participants",
  "year": 2024,
  "source_name": "CMS Innovation Center GUIDE Model page",
  "source_url": "https://www.cms.gov/priorities/innovation/innovation-models/guide",
  "notes": "Official. Eligible beneficiaries: traditional Medicare Parts A and B, dementia diagnosis, not in Medicare Advantage, PACE, hospice, or long-term nursing home (LeadingAge summary)."
 },
 {
  "metric": "CMS GUIDE Model: number of participating organizations at launch",
  "value": "almost 400 approved organizations announced July 8-9, 2024; 96 in Established Program Track (started July 1, 2024) and 294 in New Program Track (services from July 1, 2025)",
  "population": "GUIDE participant organizations (Dementia Care Programs)",
  "year": 2024,
  "source_name": "LeadingAge New York, 'CMS GUIDE Model Participants Made Public' (July 9, 2024) and LeadingAge serial post 'GUIDE Model: Aid for People Living with Dementia, Unpaid Caregivers'",
  "source_url": "https://www.leadingageny.org/providers/home-and-community-based-services/innovation-models/cmss-guide-model-participants-made-public/",
  "notes": "MEASURED (administrative count as reported by trade association from CMS participant list). 68% of selected applicants identified as physician group practice or clinic. AHA News (July 8, 2024) reported 'over 400 participants'. 2026 Facts and Figures says 'more than 300 organizations'."
 },
 {
  "metric": "CMS GUIDE Model: current number of participants",
  "value": "292",
  "population": "GUIDE participant organizations",
  "year": 2026,
  "source_name": "CMS Innovation Center GUIDE Model page, 'Model Summary' (page last modified 08/11/2026)",
  "source_url": "https://www.cms.gov/priorities/innovation/innovation-models/guide",
  "notes": "MEASURED (administrative). Lower than the ~390 announced in 2024, implying attrition/withdrawals; CMS page gives no explanation. Beneficiary enrollment/alignment counts were NOT found on any loaded CMS page."
 },
 {
  "metric": "CMS GUIDE Model: outcome results",
  "value": "none published as of September 2026",
  "population": "GUIDE-aligned beneficiaries and caregivers",
  "year": 2026,
  "source_name": "CMS Innovation Center GUIDE Model page",
  "source_url": "https://www.cms.gov/priorities/innovation/innovation-models/guide",
  "notes": "Stated aims (delay nursing home placement, reduce hospital/ED use, reduce caregiver burden, improve QoL, reduce Medicare/Medicaid spending) are goals, not results. Related RCT evidence: Care Ecosystem (benefit) and D-CARE (null) in interventions file."
 },
 {
  "metric": "Family caregivers who have used respite services vs who say respite would be helpful",
  "value": "14% used; 38% say it would be helpful (up from 33% in 2015). Among those caring for someone with a memory problem: 22% used, 46% would find helpful (vs 11% and 34% without memory problem)",
  "population": "US caregivers of adults 18+",
  "year": 2020,
  "source_name": "Caregiving in the U.S. 2020 (National Alliance for Caregiving and AARP, full report PDF), Figure 78",
  "source_url": "https://www.caregiving.org/wp-content/uploads/2021/01/full-report-caregiving-in-the-united-states-01-21.pdf",
  "notes": "MEASURED (survey)."
 },
 {
  "metric": "Respite use among dementia caregivers by race, trend",
  "value": "White dementia caregivers: 32% (2015) to 23% (2021); Black dementia caregivers: 16% (2015) to 21% (2021)",
  "population": "US dementia caregivers",
  "year": "2015-2021",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (ref 570)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey trend); secondary citation."
 },
 {
  "metric": "Area Agencies on Aging not offering evidence-based family caregiver interventions (NFCSP study)",
  "value": "52%",
  "population": "US Area Agencies on Aging (Older Americans Act National Family Caregiver Support Program)",
  "year": "not stated",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (ref 740)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (agency survey); secondary citation."
 },
 {
  "metric": "Adult day services: dementia share of users and dementia-specialized centers",
  "value": "25% of adult day services users have Alzheimer's or other dementias; 14% of adult day service centers specialized in dementia care in 2020 (up from 10% in 2016)",
  "population": "US adult day services centers and participants",
  "year": 2020,
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (refs 945, 947; NCHS National Post-acute and Long-term Care Study data)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (national provider survey); secondary citation. National count of adult day centers not on loaded pages."
 },
 {
  "metric": "Median cost of adult day services",
  "value": "$100 per day in 2024 ($104 in 2025 dollars); +5.6%/year 2021-2024 before inflation adjustment",
  "population": "US adult day services",
  "year": 2024,
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (cost-of-care survey cited by Facts and Figures)."
 },
 {
  "metric": "Federal Lifespan Respite Care Program funding and reach",
  "value": "FY2025 appropriation $10 million (up $2 million from FY2022 level); competitive grants awarded to agencies in 39 states and DC since 2009",
  "population": "US state Lifespan Respite systems (all ages/conditions)",
  "year": 2025,
  "source_name": "ACL, Lifespan Respite Care Program page",
  "source_url": "https://acl.gov/programs/support-caregivers/lifespan-respite-care-program",
  "notes": "MEASURED (administrative). Not dementia-specific."
 },
 {
  "metric": "Family caregivers having difficulty finding affordable local services (meals, transport, in-home health)",
  "value": "28% nationally; 34% in rural areas; range 17% (Arizona, Ohio) to 39% (Maryland)",
  "population": "US family caregivers",
  "year": 2025,
  "source_name": "Caregiving in the US 2025: Caring Across States (NAC/AARP, October 2025)",
  "source_url": "https://www.caregivingintheus.org/app/uploads/2025/10/caregiving-in-the-us-2025-caring-across-states.doi_.10.26419-2fppi.00383.001-1.pdf",
  "notes": "MEASURED (state-representative survey). Not dementia-specific."
 },
 {
  "metric": "Support service use (respite, support groups) among Hispanic and non-White dementia caregivers, metro vs non-metro",
  "value": "35% metropolitan vs 15% non-metropolitan",
  "population": "US Hispanic and non-White dementia caregivers",
  "year": "not stated",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (refs 529-530)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey); secondary citation."
 },
 {
  "metric": "Share of dementia caregivers by race/ethnicity",
  "value": "Two-thirds White; 10% Black; 8% Hispanic; 5% Asian American; ~10% other",
  "population": "US dementia caregivers",
  "year": "not stated (survey ref A10, reported 2026)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189), Table 9",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey)."
 },
 {
  "metric": "Black vs White caregivers: share providing >40 hours/week and share caring for someone with dementia",
  "value": "54.3% vs 38.6% provide >40 hours/week; 31.7% vs 11.9% care for someone with dementia",
  "population": "US caregivers (BRFSS-based analysis, refs 519-520)",
  "year": "not stated",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey); secondary citation."
 },
 {
  "metric": "Weekly hours of informal care received by people living with dementia, by race/ethnicity",
  "value": "Hispanic 35.8 hours/week; Black 30.1; White 20.1",
  "population": "US people living with dementia",
  "year": "not stated",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey); secondary citation."
 },
 {
  "metric": "Average weekly hours of care by caregiver race/ethnicity (all conditions)",
  "value": "African American 31.2 hours; Hispanic 26.0; Asian American 24.1; White 21.2",
  "population": "US caregivers of adults 18+",
  "year": 2020,
  "source_name": "Caregiving in the U.S. 2020 (National Alliance for Caregiving and AARP, full report PDF)",
  "source_url": "https://www.caregiving.org/wp-content/uploads/2021/01/full-report-caregiving-in-the-united-states-01-21.pdf",
  "notes": "MEASURED (survey). Not dementia-specific. High-intensity care situations: African American 54%, Hispanic 49%, White 35%, Asian American 32%."
 },
 {
  "metric": "Financial burden: Black male dementia caregivers vs White dementia caregivers",
  "value": "3.3 times more likely to experience financial burdens",
  "population": "US dementia caregivers",
  "year": "not stated",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (ref 521)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey); secondary citation."
 },
 {
  "metric": "Co-residence of people with dementia with adult children, by race/ethnicity",
  "value": "47.1% of Black and Hispanic individuals with dementia vs 24.6% of White",
  "population": "US people living with dementia",
  "year": "not stated",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189) (ref 517)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey); secondary citation."
 },
 {
  "metric": "Racial/ethnic differences in dementia caregiver well-being (meta-analysis)",
  "value": "African American caregivers better psychological well-being than White: d = -0.22 (population-based) and d = -0.21 (convenience samples); Hispanic/Latino caregivers lower physical well-being than White: d = 0.12",
  "population": "38 studies (159 effects), 2 population-based",
  "year": "published 2021",
  "source_name": "Liu, Badana, Burgdorf et al., The Gerontologist 2021 (PMID 32271380)",
  "source_url": "https://pubmed.ncbi.nlm.nih.gov/32271380/",
  "notes": "MEASURED (meta-analytic). Small effects. Hispanic physical-well-being effect varied by study bias rating."
 },
 {
  "metric": "Ethnic differences in caregiver stressors, resources and outcomes (meta-analysis of 116 studies)",
  "value": "Ethnic minority caregivers: lower SES, younger, less often spouses, provided more care, stronger filial obligation; African American caregivers lower burden and depression than White; Hispanic and Asian American caregivers more depressed than White; all minority groups worse physical health than White",
  "population": "116 empirical studies of family caregivers (not dementia-only)",
  "year": "published 2005",
  "source_name": "Pinquart & Sorensen, The Gerontologist 2005 (PMID 15695420)",
  "source_url": "https://pubmed.ncbi.nlm.nih.gov/15695420/",
  "notes": "MEASURED (meta-analytic); effect sizes not given in abstract. Not dementia-specific."
 },
 {
  "metric": "Depressive symptoms and service use among Hispanic, Black and Asian American vs White dementia caregivers",
  "value": "Greater care demands, less outside help/formal service use and more depressive symptoms; Black and Hispanic caregivers in poorer health than non-caregivers (not true for White)",
  "population": "US dementia caregivers (refs 523-527)",
  "year": "not stated",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (multiple studies); qualitative direction only on loaded page."
 },
 {
  "metric": "Caregiver distress by neighborhood income among caregivers of people with severe psychiatric symptoms",
  "value": "Higher distress in low- or medium-income neighborhoods than high-income neighborhoods (no magnitude on page)",
  "population": "US dementia caregivers",
  "year": "not stated",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (study cited); direction only."
 },
 {
  "metric": "Household income and caregiving intensity (all conditions)",
  "value": "Less than $50,000 household income: 42% of co-residing vs 32% of non-co-residing caregivers; 43% of 21+ hour vs 32% of lower-hour caregivers; 41% of high-intensity vs 32% of lower-intensity caregivers",
  "population": "US caregivers of adults 18+",
  "year": 2020,
  "source_name": "Caregiving in the U.S. 2020 (National Alliance for Caregiving and AARP, full report PDF) (footnotes 47-49)",
  "source_url": "https://www.caregiving.org/wp-content/uploads/2021/01/full-report-caregiving-in-the-united-states-01-21.pdf",
  "notes": "MEASURED (survey). Not dementia-specific; financial impacts were higher for these groups regardless of income."
 },
 {
  "metric": "Dementia caregivers who are 'sandwich generation' (caring for parent and child)",
  "value": "approximately one-quarter",
  "population": "US dementia caregivers",
  "year": "not stated (reported 2026)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189), Table 9",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey). NAC 2025 reports 29% of all family caregivers are sandwich caregivers."
 },
 {
  "metric": "Dementia caregivers age 65+ and women share",
  "value": "~30% age 65 or older; ~two-thirds women; over one-third are daughters; 70% of those giving >40 hours/week are women (BRFSS 2021-2022)",
  "population": "US dementia caregivers",
  "year": "2021-2022 (BRFSS) / not stated (survey)",
  "source_name": "2026 Alzheimer's Disease Facts and Figures (Alzheimer's Association; Alzheimer's & Dementia, PMC13098189)",
  "source_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13098189/",
  "notes": "MEASURED (survey)."
 },
 {
  "metric": "Economic value of informal dementia caregiving, state-level BRFSS caregiver module",
  "value": "3.2 million dementia caregivers provided more than 4.1 billion hours of care (avg. 1,278 hours/caregiver); valued at $41.5 billion overall (avg. $13,069/caregiver) using a median hourly replacement value of $10.28",
  "population": "Adults providing unpaid care to a person with dementia in 38 states, the District of Columbia, and Puerto Rico",
  "year": "2015-2016 (published 2018)",
  "source_name": "Rabarison KM, Bouldin ED, Bish CL, et al. The Economic Value of Informal Caregiving for Persons With Dementia: Results From 38 States, the District of Columbia, and Puerto Rico, 2015 and 2016 BRFSS. Am J Public Health 2018;108(10):1370-1377",
  "source_url": "https://doi.org/10.2105/AJPH.2018.304573",
  "notes": "PMID 30138069; PMC6137771. MEASURED (cost-replacement method applied to 2015/2016 BRFSS caregiver-module respondents, valued using US Bureau of Labor Statistics May 2016 occupation wage profiles). Covers 38 states + DC + Puerto Rico, not all 50 states, and a different, earlier vintage than the site's national $446.3 billion modelled Facts and Figures figure above, which uses a different (BRFSS-imputed, Census-scaled) method -- not directly comparable to it."
 }
]