The Disproportionate Impact Of Dementia On Family And Unpaid Caregiving To Older Adults
Open accessAbstract
The number of US adults ages sixty-five and older who are living with dementia is substantial and expected to grow, raising concerns about the demands that will be placed on family members and other unpaid caregivers. We used data from the 2011 National Health and Aging Trends Study and its companion study, the National Study of Caregiving, to investigate the role of dementia in caregiving. We found that among family and unpaid caregivers to older noninstitutionalized adults, one-third of caregivers, and 41 percent of the hours of help they provide, help people with dementia, who account for about 10 percent of older noninstitutionalized adults. Among older adults who receive help, the vast majority in both community and residential care settings other than nursing homes rely on family or unpaid caregivers (more than 90 percent and more than 80 percent, respectively), regardless of their dementia status. Caregiving is most intense, however, to older adults with dementia in community settings and from caregivers who are spouses or daughters or who live with the care recipient.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Most caregivers (66%) live with the person with dementia in the community.
“Most caregivers (66%) live with the person with dementia in the community.402”
From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [402]
The Study Results (page unavailable) discuss caregivers who live with care recipients and report that they provided about two-thirds of caregiving hours, regardless of dementia status. That is a share of hours, not a finding that 66% of caregivers lived with a person with dementia in the community. The Discussion (page unavailable) says most people with dementia live in the community, but does not establish the claimed caregiver percentage. (LLM, conf=0.86)
Experimental — accuracy not yet measuredAmong older adults with dementia who do not receive informal help, nearly half live alone.
“Of these individuals, nearly half live alone, perhaps making it more difficult to ask for and receive informal care.402”
From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [402]
The Study Results report that 40 percent of older adults with dementia who appeared to have no help lived alone, supporting the approximate figure. But that figure is for people with no apparent help, not specifically everyone who received no informal help; the paper does not give a living-alone percentage for that broader group. (LLM, conf=0.83)
Experimental — accuracy not yet measuredMore than one-third of dementia caregivers are daughters caring for a parent.
“Over one-third of dementia caregivers are daughters caring for a parent.394,402”
From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [402]
The Study Results report that 35 percent of caregivers to older adults with dementia living in the community were daughters. The citing sentence omits the community-setting restriction, so the source does not establish that the proportion exceeds one-third among dementia caregivers across all settings. Page numbers are unavailable in our copy. (LLM, conf=0.86)
Experimental — accuracy not yet measuredThirty percent of older adults with dementia rely on three or more unpaid caregivers, compared with 23% of older adults without dementia.
“30% of older adults with dementia rely on three or more unpaid caregivers, whereas 23% of older adults without dementia do so.402”
From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [402]
The Study Results report 29.5% versus 23.0%, which supports the rounded figures. But those percentages describe older adults living in community settings who received help with self-care or household activities, not all older adults with or without dementia. (LLM, conf=0.88)
Experimental — accuracy not yet measuredOnly 8% of older adults with dementia do not receive help from family members or other informal care providers.
“Only a small percentage of older adults with dementia do not receive help from family members or other informal care providers (8%).”
From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [402]
The Study Results report that 8 percent of older adults with dementia in the study population appeared to have no help. The estimate excludes nursing-home residents, and the paper says “appeared to have no help” rather than establishing that they received no help from family or other informal caregivers. (LLM, conf=0.85)
Experimental — accuracy not yet measured
Only 8% of older adults with dementia do not receive help from family members or other informal care providers.
“Only a small percentage (8%) of older adults with dementia do not receive help from family members or other informal care providers.”
From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [433]
The Study Results report that 8% of older adults with dementia appeared to have no help. That estimate concerns people in community or residential care settings other than nursing homes, and the paper says they *appeared* to have no help; the claim omits both qualifications. (LLM, conf=0.85)
Experimental — accuracy not yet measuredIndividuals with dementia living in the community are more likely than older adults without dementia to rely on multiple unpaid caregivers; 30% of older adults with dementia rely on three or more unpaid caregivers, whereas 23% of older adults without dementia do so.
“Individuals with dementia living in the community are more likely than older adults without dementia to rely on multiple unpaid caregivers (often family members); 30% of older adults with dementia rely on three or more unpaid caregivers, whereas 23% of older adults without dementia do so.”
From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [433]
Split into 2 atoms — 1 confirmed, 1 partially supported, 0 disputed, 0 misattributed, 0 unverifiable. Expand the claim to see per-atom verdicts.
Experimental — accuracy not yet measuredOver one-third of dementia caregivers in the United States are daughters caring for a parent.
“Over one‐third of dementia caregivers in the United States are daughters caring for a parent.”
From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [433]
The Study Results (Exhibit 3) report that 35 percent of caregivers to older adults with dementia living in the community were daughters. The claim applies that proportion to dementia caregivers throughout the United States, but the reported figure is limited to caregivers of community-dwelling older adults. (LLM, conf=0.87)
Experimental — accuracy not yet measuredWell over half (57%) of family caregivers of people with Alzheimer's or other dementias living in the community had provided care for four or more years.
“According to another study, well over half (57%) of family caregivers of people with Alzheimer's or other dementias living in the community had provided care for four or more years.”
From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [433]
The Study Results state that over half of caregivers to older adults living in the community provided help for four or more years, regardless of the recipient’s dementia status (page not available). Our copy does not give the claimed 57% figure, so it supports the duration and population but not the precise percentage. (LLM, conf=0.82)
Experimental — accuracy not yet measuredOn average, female caregivers spend more time caregiving than male caregivers.
“On average, female caregivers spend more time caregiving than male caregivers.402”
From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [402]
The Study Results report mean monthly hours for daughters caring for parents with versus without dementia, and say sons show a difference in the same direction. They do not compare average caregiving hours for female and male caregivers. Searches for gender-specific hours and daughter–son comparisons found no passage establishing the claimed comparison; page numbers were not available in our copy. (LLM, conf=0.75)
Experimental — accuracy not yet measuredOn average, female caregivers spend more time caregiving than male caregivers.
“On average, female caregivers spend more time caregiving than male caregivers.”
From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [433]
The Study Results report average hours for daughters caring for parents with versus without dementia and say sons show the same dementia-related pattern. They do not compare average caregiving time for female and male caregivers; searches for that comparison found no passage that does. (LLM, conf=0.72)
Experimental — accuracy not yet measured
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Hearing loss and cognitive decline in older adults
Lin, F. R., Yaffe, K., Xia, J., Xue, Q.-L., Harris, T. B., Purchase-Helzner, E., Satterfield, S., Ayonayon, H. N., Ferrucci, L., Simonsick, E. M., et al. (2013) · JAMA Internal Medicine · doi:10.1001/jamainternmed.2013.1868 · Cited by 4,017 · see citing works
Alzheimer disease in the United States (2010–2050) estimated using the 2010 census
Hebert, L. E., Weuve, J., Scherr, P. A., & Evans, D. A. (2013) · Neurology · doi:10.1212/wnl.0b013e31828726f5 · Cited by 2,642 · see citing works
Prevalence of Dementia in the United States: The Aging, Demographics, and Memory Study
Plassman, B. L., Langa, K. M., Fisher, G. G., Heeringa, S. G., Weir, D. R., Ofstedal, M. B., Burke, J. R., Hurd, M. D., Potter, G. G., Rodgers, W. L., et al. (2007) · Neuroepidemiology · doi:10.1159/000109998 · Cited by 1,932 · see citing works
Monetary Costs of Dementia in the United States
Hurd, M. D., Martorell, P., Delavande, A., Mullen, K. J., & Langa, K. M. (2013) · New England Journal of Medicine · doi:10.1056/nejmsa1204629 · Cited by 1,484 · see citing works
Family Caregiving of Persons With Dementia: Prevalence, Health Effects, and Support Strategies
Schulz, R., & Martire, L. M. (2004) · The American Journal of Geriatric Psychiatry · doi:10.1097/00019442-200405000-00002 · Cited by 1,189 · see citing works
Dementia incidence continues to increase with age in the oldest old: The 90+ study
Corrada, M. M., Brookmeyer, R., Paganini‐Hill, A., Berlau, D., & Kawas, C. H. (2010) · Annals of Neurology · doi:10.1002/ana.21915 · Cited by 523 · see citing works
Validity and reliability of the AD8 informant interview in dementia
Galvin, J. E., Roe, C. M., Xiong, C., & Morris, J. C. (2006) · Neurology · doi:10.1212/01.wnl.0000247042.15547.eb · Cited by 495 · see citing works
Lin, J. S., O’Connor, E., Rossom, R. C., Perdue, L. A., & Eckstrom, E. (2013) · Annals of Internal Medicine · doi:10.7326/0003-4819-159-9-201311050-00730 · Cited by 412 · see citing works
Caregivers of Frail Elders: Updating a National Profile
Wolff, J. L., & Kasper, J. D. (2006) · The Gerontologist · doi:10.1093/geront/46.3.344 · Cited by 391 · see citing works
Self-citationImplementing a screening and diagnosis program for dementia in primary care
Boustani, M., Callahan, C. M., Unverzagt, F. W., Austrom, M. G., Perkins, A. J., Fultz, B. A., Hui, S. L., & Hendrie, H. C. (2005) · Journal of General Internal Medicine · doi:10.1007/s11606-005-0103-7 · Cited by 374 · see citing works
New Insights into the Dementia Epidemic
Larson, E. B., Yaffe, K. S., & Langa, K. M. (2013) · New England Journal of Medicine · doi:10.1056/nejmp1311405 · Cited by 347 · see citing works
Disability and Care Needs Among Older Americans
Freedman, V. A., & Spillman, B. C. (2014) · Milbank Quarterly · doi:10.1111/1468-0009.12076 · Cited by 324 · see citing works
Self-citationFamily involvement in residential long-term care: A synthesis and critical review
Gaugler, J. E. (2005) · Aging & Mental Health · doi:10.1080/13607860412331310245 · Cited by 310 · see citing works
Potential and Active Family Caregivers: Changing Networks and the ‘Sandwich Generation’
Spillman, B. C., & Pezzin, L. E. (2000) · Milbank Quarterly · doi:10.1111/1468-0009.00177 · Cited by 306 · see citing works
Self-citationDementia Prevalence And Care In Assisted Living
Zimmerman, S. I., Sloane, P. D., & Reed, D. (2014) · Health Affairs · doi:10.1377/hlthaff.2013.1255 · Cited by 232 · see citing works
Implementing a screening and diagnosis program for dementia in primary care.
Boustani, M. A., Callahan, C. M., Unverzagt, F. W., et al. (2005) · PubMed · doi:10.1111/j.1525-1497.2005.0126.x · Cited by 191 · see citing works
Dementia Assessment in Primary Care: Results From a Study in Three Managed Care Systems
Boise, L., Neal, M. B., & Kaye, J. A. (2004) · The Journals of Gerontology Series A · doi:10.1093/gerona/59.6.m621 · Cited by 133 · see citing works
Assisted Living Expansion and the Market for Nursing Home Care
Grabowski, D. C., Stevenson, D. G., & Cornell, P. Y. (2012) · Health Services Research · doi:10.1111/j.1475-6773.2012.01425.x · Cited by 115 · see citing works
Alzheimer’s Disease And Nursing Homes
Gaugler, J. E., Yu, F., Davila, H. W., & Shippee, T. (2014) · Health Affairs · doi:10.1377/hlthaff.2013.1268 · Cited by 110 · see citing works
Kasper, J. D., & Freedman, V. A. (2014) · The Journals of Gerontology Series B · doi:10.1093/geronb/gbu125 · Cited by 93 · see citing works
Self-citationGaugler, J. E., & Kane, R. L. (2007) · The Gerontologist · doi:10.1093/geront/47.supplement_1.83 · Cited by 77 · see citing works
Cross-Survey Differences in National Estimates of Numbers of Caregivers of Disabled Older Adults
Giovannetti, E. R., & Wolff, J. L. (2010) · Milbank Quarterly · doi:10.1111/j.1468-0009.2010.00602.x · Cited by 59 · see citing works
Self-citationMace, N. L., & Rabins, P. V. (2011) · Medical Entomology and Zoology · Cited by 39 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
2016 Alzheimer's disease facts and figures
Alzheimer's Association (2016) · Alzheimer's & Dementia · doi:10.1016/j.jalz.2016.03.001 · Cited by 5,069 · see citing works
2023 Alzheimer's disease facts and figures
(2023) · Alzheimer's & Dementia · doi:10.1002/alz.13016 · Cited by 3,212 · see citing works
2024 Alzheimer's disease facts and figures
(2024) · Alzheimer's & Dementia · doi:10.1002/alz.13809 · Cited by 2,536 · see citing works
2019 Alzheimer’s disease facts and figures.
Alzheimer's Association (2019) · Alzheimer's & Dementia · doi:10.1016/j.jalz.2019.01.010 · Cited by 2,461 · see citing works
2020 Alzheimer's disease facts and figures
(2020) · Alzheimer's & Dementia · doi:10.1002/alz.12068 · Cited by 2,353 · see citing works
2022 Alzheimer's disease facts and figures
Anonymous (2022) · Alzheimer s & Dementia · doi:10.1002/alz.12638 · Cited by 2,384 · see citing works
2021 Alzheimer's disease facts and figures
Anonymous (2021) · Alzheimer s & Dementia · doi:10.1002/alz.12328 · Cited by 2,236 · see citing works
2018 Alzheimer's disease facts and figures
Alzheimer's Association (2018) · Alzheimer's & Dementia · doi:10.1016/j.jalz.2018.02.001 · Cited by 1,912 · see citing works
2017 Alzheimer's disease facts and figures
(, T. D. B. T. A.-R. C. C. A. S. O. A. C. B. S., different, ). J. A. I. A., destroyed, S. A. T. A. S. T. M. E. T. M. C. I. S. I. A. G. W. A. T. R. N. I. T. O. B. T. F. N. T. B. D. A. D. A. U. I. B. R. I. I. F. N. M. A. N. I. O. P. O. T. B. A. D. A., difficulties, I. E. O., agitation, I. N. S. S. A., & delusions., S. A. (2017) · Alzheimer s & Dementia · doi:10.1016/j.jalz.2017.02.001 · Cited by 1,322 · see citing works
Wolff, J. L., Spillman, B. C., Freedman, V. A., & Kasper, J. D. (2016) · JAMA Internal Medicine · doi:10.1001/jamainternmed.2015.7664 · Cited by 585 · see citing works
Self-citation2025 Alzheimer's disease facts and figures
(2025) · Alzheimer s & Dementia · doi:10.1002/alz.70235 · Cited by 569 · see citing works
Cohort Profile: The National Health and Aging Trends Study (NHATS)
Freedman, V. A., & Kasper, J. D. (2019) · International Journal of Epidemiology · doi:10.1093/ije/dyz109 · Cited by 307 · see citing works
Self-citationWolff, J. L., Mulcahy, J., Huang, J., Roth, D. L., Covinsky, K., & Kasper, J. D. (2018) · The Gerontologist · doi:10.1093/geront/gnx093 · Cited by 267 · see citing works
Self-citationMultifactorial Examination of Caregiver Burden in a National Sample of Family and Unpaid Caregivers
Riffin, C., Van Ness, P. H., Wolff, J. L., & Fried, T. (2019) · Journal of the American Geriatrics Society · doi:10.1111/jgs.15664 · Cited by 238 · see citing works
Self-citationFamily and Other Unpaid Caregivers and Older Adults with and without Dementia and Disability
Riffin, C., Van Ness, P. H., Wolff, J. L., & Fried, T. (2017) · Journal of the American Geriatrics Society · doi:10.1111/jgs.14910 · Cited by 221 · see citing works
Self-citationEl-Hayek, Y. H., Wiley, R. E., Khoury, C. P., Daya, R. P., Ballard, C., Evans, A. R., Karran, M., Molinuevo, J. L., Norton, M., & Atri, A. (2019) · Journal of Alzheimer's Disease · doi:10.3233/jad-190426 · Cited by 216 · see citing works
A National Profile Of End-Of-Life Caregiving In The United States
Ornstein, K. A., Kelley, A. S., Bollens‐Lund, E., & Wolff, J. L. (2017) · Health Affairs · doi:10.1377/hlthaff.2017.0134 · Cited by 167 · see citing works
Self-citationMoskowitz, J. T., Cheung, E. O., Snowberg, K. E., Verstaen, A., Merrilees, J. J., Salsman, J. M., & Dowling, G. A. (2019) · Health Psychology · doi:10.1037/hea0000680 · Cited by 161 · see citing works
Cohen, S. A., Sabik, N. J., Cook, S. K., Azzoli, A. B., & Mendez‐Luck, C. A. (2019) · Journal of Cross-Cultural Gerontology · doi:10.1007/s10823-019-09381-9 · Cited by 149 · see citing works
Deaths from Alzheimer’s Disease — United States, 1999–2014
Taylor, C. A., Greenlund, S. F., McGuire, L. C., Lu, H., & Croft, J. B. (2017) · MMWR. Morbidity and Mortality Weekly Report · doi:10.15585/mmwr.mm6620a1 · Cited by 144 · see citing works
Change Over Time in Caregiving Networks for Older Adults With and Without Dementia
Spillman, B. C., Freedman, V. A., Kasper, J. D., & Wolff, J. L. (2020) · The Journals of Gerontology: Series B · doi:10.1093/geronb/gbz065 · Cited by 103 · see citing works
Self-citationCaregiving Burden Among Caregivers of People With Dementia Through the Lens of Intersectionality
Liu, R., Chi, I., & Wu, S. (2022) · The Gerontologist · doi:10.1093/geront/gnab146 · Cited by 92 · see citing works
Dementia-Friendly Neighborhood and the Built Environment: A Scoping Review
Gan, D. R. Y., Chaudhury, H., Mann, J., & Wister, A. (2021) · The Gerontologist · doi:10.1093/geront/gnab019 · Cited by 87 · see citing works
Volgman, A. S., Merz, C. N. B., Aggarwal, N. T., Bittner, V., Bunch, T. J., Gorelick, P. B., Maki, P. M., Patel, H. N., Poppas, A., Ruskin, J. N., et al. (2019) · Journal of the American Heart Association · doi:10.1161/jaha.119.013154 · Cited by 80 · see citing works
Bayly, M. K., Morgan, D., Chow, A. F., Kosteniuk, J. G., & Elliot, V. (2020) · Canadian Journal on Aging / La Revue canadienne du vieillissement · doi:10.1017/s0714980819000564 · Cited by 79 · see citing works
Abreu, W., Tolson, D., Jackson, G., & Costa, N. (2020) · Dementia · doi:10.1177/1471301218773842 · Cited by 64 · see citing works
Wolff, J. L., Freedman, V. A., Mulcahy, J., & Kasper, J. D. (2020) · JAMA Network Open · doi:10.1001/jamanetworkopen.2019.19866 · Cited by 77 · see citing works
Self-citationFreedman, V. A., Agree, E. M., Seltzer, J. A., Birditt, K. S., Fingerman, K. L., Friedman, E. M., Lin, I., Margolis, R., Park, S. S., Patterson, S., et al. (2023) · The Gerontologist · doi:10.1093/geront/gnad036 · Cited by 74 · see citing works
Self-citationd’Abramo, C., D'adamio, L., & Giliberto, L. (2020) · Journal of Personalized Medicine · doi:10.3390/jpm10030116 · Cited by 68 · see citing works
Does Caregiving Strain Increase as Patients With and Without Dementia Approach the End of Life?
Vick, J. B., Ornstein, K. A., Szanton, S. L., Dy, S. M., & Wolff, J. L. (2019) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2018.11.004 · Cited by 68 · see citing works
Self-citationRural‐urban differences in informal caregiving and health‐related quality of life
Cohen, S. A., Ahmed, N., Brown, M. J., Meucci, M. R., & Greaney, M. L. (2021) · The Journal of Rural Health · doi:10.1111/jrh.12581 · Cited by 63 · see citing works
Wolff, J. L., Cornman, J. C., & Freedman, V. A. (2025) · Health Affairs · doi:10.1377/hlthaff.2024.00978 · Cited by 62 · see citing works
Self-citationUnderstanding Caregiver Quality of Life in Caregivers of Hospitalized Older Adults with Cancer
Hsu, T., Nathwani, N., Loscalzo, M., Chung, V., Chao, J., Karanes, C., Koczywas, M., Forman, S., Lim, D., Siddiqi, T., et al. (2019) · Journal of the American Geriatrics Society · doi:10.1111/jgs.15841 · Cited by 60 · see citing works
Musich, S. A., Wang, S. S., Kraemer, S., Hawkins, K., & Wicker, E. R. (2016) · Geriatric Nursing · doi:10.1016/j.gerinurse.2016.06.017 · Cited by 62 · see citing works
Freedman, V. A., Patterson, S. E., Cornman, J. C., & Wolff, J. L. (2022) · Alzheimer's & Dementia · doi:10.1002/alz.12550 · Cited by 58 · see citing works
Self-citationChoi, H., Heisler, M., Norton, E. C., Langa, K. M., Cho, T., & Connell, C. M. (2021) · Health Affairs · doi:10.1377/hlthaff.2021.00280 · Cited by 58 · see citing works
Risk of Developing Dementia at Older Ages in the United States
Fishman, E. (2017) · Demography · doi:10.1007/s13524-017-0598-7 · Cited by 58 · see citing works
Forsyth, A., Molinsky, J., & Kan, H. Y. (2019) · URBAN DESIGN International · doi:10.1057/s41289-019-00081-x · Cited by 58 · see citing works
Residential Setting and the Cumulative Financial Burden of Dementia in the 7 Years Before Death
Kelley, A. S., McGarry, K., Bollens‐Lund, E., Rahman, O., Husain, M., Ferreira, K. B., & Skinner, J. S. (2020) · Journal of the American Geriatrics Society · doi:10.1111/jgs.16414 · Cited by 54 · see citing works
Liang, J., Aranda, M., & Lloyd, D. A. (2020) · Journal of Aging and Health · doi:10.1177/0898264320926062 · Cited by 56 · see citing works
Family caregiving in the community up to 8-years after onset of dementia
Jutkowitz, E., Gaugler, J. E., Trivedi, A. N., Mitchell, L. L., & Gozalo, P. (2020) · BMC Geriatrics · doi:10.1186/s12877-020-01613-9 · Cited by 50 · see citing works
Green, A. R., Lee, P. J., Reeve, E., Wolff, J. L., Chen, C. C. G., Kruzan, R. M., & Boyd, C. M. (2019) · The Journal of the American Board of Family Medicine · doi:10.3122/jabfm.2019.03.180335 · Cited by 54 · see citing works
Self-citationWhite, C. L., Overbaugh, K. J., Pickering, C. E. Z., Piernik-Yoder, B., James, D., Patel, D. I., Puga, F., Ford, L. A., & Cleveland, J. A. (2018) · Research Involvement and Engagement · doi:10.1186/s40900-018-0084-4 · Cited by 53 · see citing works
Xiang, X., Lai, P. H. L., Bao, L., Sun, Y., Chen, J., Dunkle, R. E., & Maust, D. T. (2020) · Journal of Aging and Health · doi:10.1177/0898264320953693 · Cited by 51 · see citing works
Moholt, J.-M., Friborg, O., Blix, B. H., & Henriksen, N. O. (2018) · Dementia · doi:10.1177/1471301218804981 · Cited by 49 · see citing works
Assessing and Addressing Family Caregivers' Needs and Risks in Primary Care
Riffin, C. A., Wolff, J. L., & Pillemer, K. A. (2020) · Journal of the American Geriatrics Society · doi:10.1111/jgs.16945 · Cited by 49 · see citing works
Self-citationCheung, D. S. K., Tang, S. K., Ho, K. H. M., Jones, C., Tse, M. Y. M., Kwan, R. Y. C., Chan, K. Y., & Chiang, C. L. V. (2021) · Geriatric Nursing · doi:10.1016/j.gerinurse.2021.02.002 · Cited by 46 · see citing works
Impact of the REACH II and REACH VA Dementia Caregiver Interventions on Healthcare Costs
Nichols, L. O., Martindale-Adams, J. L., Zhu, C. W., Kaplan, E. K., Zuber, J. K., & Waters, T. M. (2017) · Journal of the American Geriatrics Society · doi:10.1111/jgs.14716 · Cited by 44 · see citing works
Potter, A. J. (2018) · Journal of Aging & Social Policy · doi:10.1080/08959420.2017.1414539 · Cited by 44 · see citing works
Long‐Term Nursing Home Entry: A Prognostic Model for Older Adults with a Family or Unpaid Caregiver
Wolff, J. L., Mulcahy, J., Roth, D. L., Cenzer, I. S., Kasper, J. D., Huang, J., & Covinsky, K. E. (2018) · Journal of the American Geriatrics Society · doi:10.1111/jgs.15447 · Cited by 44 · see citing works
Self-citationPatient Portals to Support Care Partner Engagement in Adolescent and Adult Populations
Gleason, K. T., Peereboom, D., Wec, A., & Wolff, J. L. (2022) · JAMA Network Open · doi:10.1001/jamanetworkopen.2022.48696 · Cited by 45 · see citing works
Self-citationDo Caregiving Factors Affect Hospitalization Risk Among Disabled Older Adults?
Amjad, H., Mulcahy, J., Kasper, J. D., Burgdorf, J., Roth, D. L., Covinsky, K., & Wolff, J. L. (2021) · Journal of the American Geriatrics Society · doi:10.1111/jgs.16817 · Cited by 38 · see citing works
Self-citation2026 Alzheimer's disease facts and figures
(2026) · Alzheimer s & Dementia · doi:10.1002/alz.71345 · Cited by 61 · see citing works
Lee, M., Ryoo, J. H., Crowder, J., Byon, H. D., & Williams, I. C. (2019) · Journal of Advanced Nursing · doi:10.1111/jan.14262 · Cited by 39 · see citing works
Implementing and sustaining family care programs in real-world settings: Barriers and facilitators
Hodgson, N. A., & Gitlin, L. N. (2021) · Elsevier eBooks · doi:10.1016/b978-0-12-813898-4.00006-3 · Cited by 39 · see citing works
Paid Caregivers in the Community-based Dementia Care Team: Do Family Caregivers Benefit?
Reckrey, J. M., Boerner, K., Franzosa, E. C., Bollens‐Lund, E., & Ornstein, K. A. (2021) · Clinical Therapeutics · doi:10.1016/j.clinthera.2021.03.022 · Cited by 39 · see citing works
Early-onset dementia: key issues using a relationship-centred care approach
Nwadiugwu, M. C. (2020) · Postgraduate Medical Journal · doi:10.1136/postgradmedj-2020-138517 · Cited by 38 · see citing works
Statz, T. L., Peterson, C. M., Birkeland, R. W., McCarron, H. R., Finlay, J. M., Rosebush, C. E., Baker, Z. G., & Gaugler, J. E. (2022) · Couple and Family Psychology Research and Practice · doi:10.1037/cfp0000150 · Cited by 37 · see citing works
Mitchell, L. L., Peterson, C., Rud, S. R., Jutkowitz, E., Sarkinen, A., Trost, S., Porta, C. M., Finlay, J., & Gaugler, J. E. (2018) · Journal of Applied Gerontology · doi:10.1177/0733464818760238 · Cited by 36 · see citing works
Burke, R. E., Xu, Y., Ritter, A. Z., & Werner, R. M. (2021) · Health Services Research · doi:10.1111/1475-6773.13855 · Cited by 35 · see citing works
The Impact of Agitation in Dementia on Caregivers: A Real-World Survey
Schein, J. R., Houle, C. R., Urganus, A., Jones, E., Pike, J., Husbands, J., & Willey, C. J. (2022) · Journal of Alzheimer s Disease · doi:10.3233/jad-215670 · Cited by 36 · see citing works
Ptomey, L. T., Vidoni, E. D., Montenegro‐Montenegro, E., Thompson, M. A., Sherman, J. R., Gorczyca, A. M., Greene, J. L., Washburn, R. A., & Donnelly, J. E. (2019) · Journal of Aging and Physical Activity · doi:10.1123/japa.2018-0298 · Cited by 33 · see citing works
Gilson, A. M., Dodds, D., Kaur, A., Potteiger, M., & Ford, J. H. (2019) · JMIR Formative Research · doi:10.2196/14530 · Cited by 34 · see citing works
Wolff, J. L., DesRoches, C. M., Amjad, H., Burgdorf, J. G., Caffrey, M., Fabius, C. D., Gleason, K. T., Green, A. R., Lin, C., Nothelle, S. K., et al. (2023) · Alzheimer s & Dementia · doi:10.1002/alz.12918 · Cited by 34 · see citing works
Self-citationPauley, T., Chang, B. W., Wojtak, A., Seddon, G., & Hirdes, J. P. (2018) · Professional Case Management · doi:10.1097/ncm.0000000000000245 · Cited by 33 · see citing works
Hu, M., Freedman, V. A., Patterson, S., & Lewis, N. (2022) · The Gerontologist · doi:10.1093/geront/gnac155 · Cited by 33 · see citing works
Self-citation“I Am the Home Care Agency”: The Dementia Family Caregiver Experience Managing Paid Care in the Home
Reckrey, J. M., Watman, D., Tsui, E. K., Franzosa, E., Perez, S., Fabius, C. D., & Ornstein, K. A. (2022) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph19031311 · Cited by 32 · see citing works
Caregiver support and place of death among older adults
Lei, L., Gerlach, L. B., Powell, V. D., & Maust, D. T. (2021) · Journal of the American Geriatrics Society · doi:10.1111/jgs.17055 · Cited by 35 · see citing works
Correlates of caregivers' involvement in the management of older adults' medications
Noureldin, M., & Plake, K. S. (2017) · Research in Social and Administrative Pharmacy · doi:10.1016/j.sapharm.2016.09.009 · Cited by 32 · see citing works
Caregivers dying before care recipients with dementia
Gaugler, J. E., Jutkowitz, E., Peterson, C. M., & Zmora, R. (2018) · Alzheimer's & Dementia: Translational Research & Clinical Interventions · doi:10.1016/j.trci.2018.08.010 · Cited by 32 · see citing works
Use of the patient portal among older adults with diagnosed dementia and their care partners
Gleason, K. T., Wu, M. M. J., Wec, A., Powell, D. S., Zhang, T., Gamper, M. J., Green, A. R., Nothelle, S. K., Amjad, H., & Wolff, J. L. (2023) · Alzheimer s & Dementia · doi:10.1002/alz.13354 · Cited by 31 · see citing works
Self-citationMonfared, A. A. T., Khachatryan, A., Hummel, N., Kopiec, A., Martinez, M., Zhang, R. J., & Zhang, Q. (2024) · Journal of Alzheimer s Disease · doi:10.3233/jad-231259 · Cited by 32 · see citing works
Deep neural network models for identifying incident dementia using claims and EHR datasets
Nori, V. S., Hane, C. A., Sun, Y., Crown, W. H., & Bleicher, P. A. (2020) · PLoS ONE · doi:10.1371/journal.pone.0236400 · Cited by 30 · see citing works
A mixed method study exploring gender differences in dementia caregiving
Poisson, V. O., Poulos, R. G., Withall, A. L., Reilly, A., Emerson, L., & O’Connor, C. M. C. (2023) · Dementia · doi:10.1177/14713012231201595 · Cited by 30 · see citing works
Family Caregiving for Those With and Without Dementia in the Last 10 Years of Life
Reckrey, J. M., Bollens‐Lund, E., Husain, M., Ornstein, K. A., & Kelley, A. S. (2020) · JAMA Internal Medicine · doi:10.1001/jamainternmed.2020.4012 · Cited by 29 · see citing works
Patterns of Caregiving Among Older Adults With and Without Dementia: A Latent Class Analysis
Ali, T., McAvay, G., Monin, J. K., & Gill, T. M. (2021) · The Journals of Gerontology Series B · doi:10.1093/geronb/gbab237 · Cited by 30 · see citing works
Burgdorf, J. G., Reckrey, J. M., & Russell, D. (2022) · The Gerontologist · doi:10.1093/geront/gnac165 · Cited by 29 · see citing works
Armstrong, N. M., Gitlin, L. N., Parisi, J. M., Roth, D. L., & Gross, A. L. (2018) · Aging & Mental Health · doi:10.1080/13607863.2018.1441263 · Cited by 29 · see citing works
What Can Economics Say about Alzheimer’s Disease?
Chandra, A., Coile, C., & Mommaerts, C. (2023) · Journal of Economic Literature · doi:10.1257/jel.20211660 · Cited by 27 · see citing works
Cost-Effective Care Coordination for People With Dementia at Home
Willink, A., Davis, K. C., Johnston, D. M., Black, B. S., Reuland, M., Stockwell, I., Amjad, H., Lyketsos, C. G., & Samus, Q. M. (2020) · Innovation in Aging · doi:10.1093/geroni/igz051 · Cited by 27 · see citing works
Dementia Prevalence, Incidence, and Mortality Trends Among U.S. Adults Ages 72 and Older, 2011–2021
Freedman, V. A., & Cornman, J. C. (2024) · The Journals of Gerontology Series A · doi:10.1093/gerona/glae105 · Cited by 26 · see citing works
Self-citationPaid Caregiver Communication With Homebound Older Adults, Their Families, and the Health Care Team
Reckrey, J. M., Geduldig, E. T., Lindquist, L. A., Morrison, R. S., Boerner, K., Federman, A. D., & Brody, A. A. (2019) · The Gerontologist · doi:10.1093/geront/gnz067 · Cited by 26 · see citing works
The Effect of Physical and Cognitive Impairments on Caregiving
Jutkowitz, E., Gozalo, P., Trivedi, A., Mitchell, L., & Gaugler, J. E. (2020) · Medical Care · doi:10.1097/mlr.0000000000001323 · Cited by 25 · see citing works
Slaboda, J. C., Nelson, S. H., Agha, Z., & Norman, G. J. (2021) · BMC Health Services Research · doi:10.1186/s12913-021-06086-z · Cited by 28 · see citing works
Mzezewa, S. C., Omoruyi, S. I., Zondagh, L. S., Malan, S. F., Ekpo, O. E., & Joubert, J. (2021) · Journal of Enzyme Inhibition and Medicinal Chemistry · doi:10.1080/14756366.2021.1913137 · Cited by 25 · see citing works
Impact of diagnosed (vs undiagnosed) dementia on family caregiving experiences
Burgdorf, J. G., & Amjad, H. (2023) · Journal of the American Geriatrics Society · doi:10.1111/jgs.18155 · Cited by 24 · see citing works
A scoping review of dementia caregiving for Korean Americans and recommendations for future research
Park, V. T., Ly, Q., von Oppenfeld, J., Lee, Y., Joo, Y., Shin, H., Rhee, Y., & Park, L. G. (2022) · Clinical Gerontologist · doi:10.1080/07317115.2022.2133907 · Cited by 24 · see citing works
Cheon, H., Song, J., Kim, J., & Jung, S. (2022) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2022.104205 · Cited by 24 · see citing works
Goodson, M. L., McLellan, E., Rosli, R., Tan, M. P., Kamaruzzaman, S. B., Robinson, L. A., & Moloney, S. (2021) · Frontiers in Public Health · doi:10.3389/fpubh.2021.637484 · Cited by 23 · see citing works
Reimagining Robots for Dementia
Lee, H. R., Sun, F., Iqbal, T., & Roberts, B. (2023) · ACM/IEEE International Conference on Human-Robot Interaction (HRI) · doi:10.1145/3568162.3578624 · Cited by 23 · see citing works
Maniar, N., Chan, S., Zulfikar, W. D., Ren, S., Xu, C., & Maes, P. (2025) · ACM International Conference on Intelligent User Interfaces (IUI) · doi:10.1145/3708359.3712151 · Cited by 23 · see citing works
Perales‐Puchalt, J., Acosta-Rullán, M., Ramírez, M., Espinoza-Kissell, P., Vidoni, E. D., Niedens, M., Ellerbeck, E. F., Hinton, L., Loera, L., Ramírez, A. S., et al. (2022) · JMIR Aging · doi:10.2196/35625 · Cited by 22 · see citing works
Jutkowitz, E., Pizzi, L. T., Shewmaker, P., Alarid‐Escudero, F., Epstein‐Lubow, G., Prioli, K. M., Gaugler, J. E., & Gitlin, L. N. (2023) · Alzheimer's & Dementia · doi:10.1002/alz.12964 · Cited by 22 · see citing works
“What choice do we have?” Reactive and proactive decision‐making for aging in place with dementia
Auriemma, C. L., Butt, M. I., McMillan, J., Silvestri, J. A., Chow, C., Bahti, M., Klaiman, T. A., Harkins, K. A., Karlawish, J. H., & Halpern, S. D. (2024) · Journal of the American Geriatrics Society · doi:10.1111/jgs.19140 · Cited by 22 · see citing works
Disbrow, E. A., Arnold, C. L., Glassy, N., Tilly, C. M., Langdon, K. M., Gungor, D., & Davis, T. C. (2020) · Journal of Applied Gerontology · doi:10.1177/0733464820904568 · Cited by 21 · see citing works
Svedin, F., Brantnell, A., Farrand, P. A., Blomberg, O., Coumoundouros, C., von Essén, L., Åberg, A. C., & Woodford, J. (2021) · BMJ Open · doi:10.1136/bmjopen-2020-048097 · Cited by 21 · see citing works
Caring for Older Adults With Vision Impairment and Dementia
Varadaraj, V., Chung, S.-E., Swiatek, K., Sheehan, O. C., Deemer, A. D., Ehrlich, J. R., Wolff, J. L., Assi, L., Roth, D. L., & Swenor, B. K. (2020) · Innovation in Aging · doi:10.1093/geroni/igaa043 · Cited by 21 · see citing works
Self-citationSleep Disturbance and Strain Among Caregivers of Persons Living With Dementia
Osakwe, Z. T., Senteio, C. R., Bubu, O. M., Obioha, C. U., Turner, A. D., Thawani, S. P., Calixte, R., & Jean‐Louis, G. (2022) · Frontiers in Aging Neuroscience · doi:10.3389/fnagi.2021.734382 · Cited by 20 · see citing works
Fragmentation of care in the last year of life: Does dementia status matter?
Nothelle, S. K., Kelley, A. S., Zhang, T., Roth, D. L., Wolff, J. L., & Boyd, C. M. (2022) · Journal of the American Geriatrics Society · doi:10.1111/jgs.17827 · Cited by 20 · see citing works
Self-citationUse of provider‐sponsored patient portals among older adults and their family caregivers
Burgdorf, J. G., Fabius, C. D., & Wolff, J. L. (2022) · Journal of the American Geriatrics Society · doi:10.1111/jgs.18187 · Cited by 20 · see citing works
Self-citation
- Authors
- Kasper, J. D., Freedman, V. A., Spillman, B. C., & Wolff, J. L.
- Affiliations
- Johns Hopkins University (US)
- University of Michigan (US)
- Urban Institute (US)
- Venue
- Health Affairs
- Publisher
- Health Affairs Publishing, LLC
- Published
- 2015-10
- Volume
- 34
- Issue
- 10
- Pages
- 1642-1649
- ISSN
- 0278-2715 (ISSN-L)
- 1544-5208
- PMC
- PMC4635557
- OpenAlex
- W2298583712
- Cited by
- 354
- References
- 22
- Citations by year
- 2026: 26 · 2025: 60 · 2024: 52 · 2023: 40 · 2022: 55 · 2021: 39 · 2020: 25 · 2019: 24 · 2018: 16 · 2017: 11 · 2016: 6
- FWCI
- 8.92
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Health Affairs (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institute on Aging (U01AG032947)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Social Sciences › Sociology and Political Science › Intergenerational Family Dynamics and Caregiving
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- dementia, unpaid caregiving, family caregivers, older adults, caregiver burden, community-based care, residential care, spousal caregiving, daughters as caregivers, caregiving hours
- MeSH terms
- Aged, Aged, 80 and over, Dementia, Family, Female, Home Care Services, Humans, Male, Caregivers
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
