Dementia severity and the longitudinal costs of informal care in the Cache County population
Open accessAbstract
Background: Dementia costs are critical for influencing healthcare policy, but limited longitudinal information exists. We examined longitudinal informal care costs of dementia in a population‐based sample. Methods: Data from the Cache County Study included dementia onset, duration, and severity assessed by the Mini‐Mental State Examination (MMSE), Clinical Dementia Rating Scale (CDR), and Neuropsychiatric Inventory (NPI). Informal costs of daily care (COC) was estimated based on median Utah wages. Mixed models estimated the relationship between severity and longitudinal COC in separate models for MMSE and CDR. Results: Two hundred and eighty‐seven subjects (53% female, mean (standard deviation) age was 82.3 (5.9) years) participated. Overall COC increased by 18% per year. COC was 6% lower per MMSE‐point increase and compared with very mild dementia, COC increased over twofold for mild, fivefold for moderate, and sixfold for severe dementia on the CDR. Conclusions: Greater dementia severity predicted higher costs. Disease management strategies addressing dementia progression may curb costs.
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A longitudinal study found that the overall value of daily family care increased 18% with each additional year of providing care, and increased further as the care recipient's cognitive abilities declined.
“A longitudinal study of the monetary value of family caregiving for people with dementia found that the overall value of daily family care increased 18% with each additional year of providing care, and that the value of this care further increased as the care recipient's cognitive abilities declined.”
From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [455]
A longitudinal study found that the overall value of daily family care increased 18% with each additional year of providing care, and that the value of this care further increased as the care recipient's cognitive abilities declined.
“A longitudinal study of the monetary value of family caregiving for people with dementia found that the overall value of daily family care increased 18% with each additional year of providing care, and that the value of this care further increased as the care recipient's cognitive abilities declined. 495”
From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [495]
Family care costs are reduced by up to 24% when caregivers report emotional closeness to the person with dementia.
“In contrast, family care costs are reduced up to 24% in situations where caregivers indicated they were emotionally close to the person with dementia.455,456”
From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [455]
The Methods section describes estimating informal-care costs from caregiver hours, and the Discussion links higher costs to dementia severity. Neither reports whether caregivers felt emotionally close to the person with dementia or a cost reduction of up to 24% (searched: emotional closeness, caregiver relationship, 24%). (LLM, conf=0.76)
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 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [455]
The Introduction describes a community-dwelling dementia cohort followed for as many as seven years, and the Discussion describes measurements of caregiving hours. Neither section reports how long family caregivers had provided care. Searches for “57%” and “four or more years” found no passage supporting the claimed proportion. (LLM, conf=0.74)
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Scrafford, C., Bi, X., Multani, J. K., Murphy, M. M., Schmier, J. K., & Barraj, L. M. (2018) · Journal of the Academy of Nutrition and Dietetics · doi:10.1016/j.jand.2018.10.002 · Cited by 52 · see citing works
Cost of Treatment and Care for People with Alzheimer’s Disease: A Meta- Analysis
Marešová, P., Dolejš, J., Mohelská, H., & Bryan, L. L. K. (2020) · Current Alzheimer Research · doi:10.2174/1567205017666200102144640 · Cited by 45 · see citing works
Jutkowitz, E., Kuntz, K. M., Dowd, B. E., Gaugler, J. E., MacLehose, R. F., & Kane, R. L. (2017) · Alzheimer s & Dementia · doi:10.1016/j.jalz.2016.12.011 · Cited by 41 · see citing works
Rattinger, G. B., Fauth, E. B., Behrens, S., Sanders, C., Schwartz, S., Norton, M. C., Corcoran, C., Mullins, C. D., Lyketsos, C. G., & Tschanz, J. T. (2016) · Alzheimer's & Dementia · doi:10.1016/j.jalz.2016.03.008 · Cited by 39 · see citing works
“We have extended the previous findings in the DPS cohort that (1) CRC is associated with slower dementia progression over time [16] and (2) dementia severity is associated with increasing costs of informal care over time [12].”
BackgroundMethodResultInfluentialSelf-citation2026 Alzheimer's disease facts and figures
(2026) · Alzheimer s & Dementia · doi:10.1002/alz.71345 · Cited by 61 · see citing works
Watson, J., Giebel, C., Green, M., Darlington‐Pollock, F., & Akpan, A. (2021) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.5419 · Cited by 39 · see citing works
Burley, C. V., Livingston, G., Knapp, M. R. J., Wimo, A. B., Norman, R., & Brodaty, H. (2020) · International Psychogeriatrics · doi:10.1017/s104161022000037x · Cited by 38 · see citing works
“Other studies have reported between 1.6% and 17% increase in costs per 1-point increase in the total NPI in a community setting (Jönsson et al., 2006; Lacey et al., 2013; Rattinger et al., 2015; Costa et al., 2018).”
BackgroundMethodInfluentialCaregiver Burden of Spinal Muscular Atrophy: A Systematic Review
Landfeldt, E., Abner, S. C., Pechmann, A., Sejersen, T., McMillan, H. J., Lochmüller, H., & Kirschner, J. (2022) · PharmacoEconomics · doi:10.1007/s40273-022-01197-9 · Cited by 37 · see citing works
Rattinger, G. B., Sanders, C. L., Vernon, E. K., Schwartz, S., Behrens, S., Lyketsos, C. G., & Tschanz, J. T. (2019) · Alzheimer s & Dementia Translational Research & Clinical Interventions · doi:10.1016/j.trci.2019.01.002 · Cited by 31 · see citing works
“This approach was previously applied to the DPS data when estimating costs [3].”
BackgroundMethodInfluentialSelf-citationDetecting clinical change with the CDR-FTLD: differences between FTLD and AD dementia
Mioshi, E., Flanagan, E., & Knopman, D. (2017) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.4556 · Cited by 29 · see citing works
“It is extensively used in drug trials and research studies (Schneider et al., 1997; Rattinger et al., 2015).”
BackgroundRamos‐Campos, M., Redolat, R., & Mesa‐Gresa, P. (2020) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph17072190 · Cited by 27 · see citing works
“Deterioration associated with the caring task could be manifested as an impairment of memory (both immediate and delayed), reduced verbal fluency, vocabulary and executive functions decline [5,29] and, in some subjects, as an increased risk of developing dementia [30,31].”
BackgroundTaipale, H. T., Purhonen, M., Tolppanen, A., Tanskanen, A. J., Tiihonen, J., & Hartikainen, S. A. (2015) · Scandinavian Journal of Public Health · doi:10.1177/1403494815614705 · Cited by 26 · see citing works
“In addition, the severity of dementia is a predictor of higher informal care costs among persons with dementia [14].”
BackgroundJetsonen, V., Kuvaja-Köllner, V., Välimäki, T. H., Selander, T. A., Martikainen, J. A., & Koivisto, A. M. (2021) · Age and Ageing · doi:10.1093/ageing/afab144 · Cited by 25 · see citing works
Mental health effects of caregivers respite: Subsidies or Supports?
Costa‐Font, J., & Vilaplana‐Prieto, C. (2022) · The Journal of the Economics of Ageing · doi:10.1016/j.jeoa.2022.100398 · Cited by 24 · see citing works
Cost–Benefit Analysis of the COPE Program for Persons Living With Dementia: Toward a Payment Model
Pizzi, L. T., Jutkowitz, E., Prioli, K. M., Lu, E., Babcock, Z. R., McAbee‐Sevick, H., Wakefield, D. B., Robison, J. T., Molony, S. L., Piersol, C. V., et al. (2021) · Innovation in Aging · doi:10.1093/geroni/igab042 · Cited by 22 · see citing works
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Walsh, S., Pertl, M. M., Gillespie, P., LAWLOR, B. A., Brennan, S., & O’Shea, E. (2019) · Aging & Mental Health · doi:10.1080/13607863.2019.1699901 · Cited by 19 · see citing works
Heterogeneity in Reports of Dementia Disease Duration and Severity: A Review of the Literature
Brück, C. C., Wolters, F. J., Ikram, M. A., & de Kok, I. M. C. M. (2021) · Journal of Alzheimer s Disease · doi:10.3233/jad-210544 · Cited by 17 · see citing works
Nakabe, T., Sasaki, N., Uematsu, H., Kunisawa, S., Wimo, A. B., & Imanaka, Y. (2019) · BMJ Open · doi:10.1136/bmjopen-2018-026733 · Cited by 16 · see citing works
Behrens, S., Rattinger, G. B., Schwartz, S., Matyi, J., Sanders, C., DeBerard, M. S., Lyketsos, C. G., & Tschanz, J. T. (2018) · International Psychogeriatrics · doi:10.1017/s104161021800011x · Cited by 16 · see citing works
Self-citationCall for a Uniform Strategy of Collecting Alzheimer’s Disease Costs: A Review and Meta-Analysis
Marešová, P., Dolejš, J., & Kuča, K. (2018) · Journal of Alzheimer s Disease · doi:10.3233/jad-171028 · Cited by 15 · see citing works
“appropriate terminology, these services are mostly 527 known as social care and informal costs [40, 41].”
Qureshi, Z. P., Thiel, E., Nelson, J., & Khandker, R. K. (2021) · Journal of Alzheimer s Disease · doi:10.3233/jad-210713 · Cited by 13 · see citing works
Olchanski, N., Zhu, Y., Liang, L., Cohen, J. T., Faul, J. D., Fillit, H. M., Freund, K. M., & Lin, P. (2024) · Journal of the American Geriatrics Society · doi:10.1111/jgs.18822 · Cited by 10 · see citing works
The personal cost of dementia care in Japan: A comparative analysis of residence types
Nakabe, T., Sasaki, N., Uematsu, H., Kunisawa, S., Wimo, A. B., & Imanaka, Y. (2018) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.4916 · Cited by 10 · see citing works
“A maximum daily informal care time of 16 hours was assumed in order to allow for other activities and sleeping time.(25-27)”
ResultHu, S., Yu, X., Chen, S., Clay, E., Toumi, M., & Milea, D. (2015) · Expert Review of Pharmacoeconomics & Outcomes Research · doi:10.1586/14737167.2015.1065734 · Cited by 9 · see citing works
Walter, D., Pengel, J., Steuck, P.-F., Maria, M. D., Knackstedt, R., & Meißner, A. (2025) · BMC Nursing · doi:10.1186/s12912-025-03868-2 · Cited by 8 · see citing works
“As caregiving roles shift depending on factors such as the severity of the care recipient’s condition [44], the caregiver’s emotional state [5], or evolving contextual demands [45], it is essential for the chatbot to adapt dynamically to these changing care-giving contexts.”
Manderson, L. H., Brear, M., Rusere, F., Farrell, M. T., Gómez-Olivé, F. X., Berkman, L. F., Kahn, K., & Harling, G. (2022) · Wellcome Open Research · doi:10.12688/wellcomeopenres.18078.1 · Cited by 8 · see citing works
“Burden increases as dementia care recipients become more confused, emotionally labile, and unpredictable in behaviours and capability (Dodel et al., 2015; Rattinger et al., 2015).”
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Accessing GPDs from experiment --- potential of a high-luminosity EIC ---Preprint
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“Family time spent caregiving was limited to a maximum of 16 hours/day consistent with previous studies (Penrod et al., 1998; Rattinger et al., 2015; Zhu et al., 2006).”
Self-citationThe costs of dementia care by US state: Medical spending and the cost of unpaid caregiving
Lastuka, A., Breshock, M. R., Taylor, K. V., & Dieleman, J. L. (2025) · Journal of Alzheimer s Disease · doi:10.1177/13872877251326231 · Cited by 5 · see citing works
“7,9 If the average level of dementia severity is higher in some US states, then both costs will be higher in those states, thereby obscuring the relationship between medical spending and costs of informal care.”
Vesikansa, A., Halminen, O., Mehtälä, J., Hörhammer, I., Mikkola, T. M., Ylisaukko‐oja, T., & Linna, M. (2022) · The European Journal of Health Economics · doi:10.1007/s10198-022-01553-8 · Cited by 5 · see citing works
Ascertaining Out-of-Pocket Costs of Dementia Care: Feasibility Study of a Web-Based Weekly Survey
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Methotrexate and the Risk of Dementia: A Two-Sample Mendelian Randomization Study
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“The increasing severity of dementia has led to a corresponding increase in the cost of care, which is estimated at $81.8 billion per year globally [14–16].”
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Caring for Carers? The Effect of Public Subsidies on the Wellbeing of Unpaid CarersPreprint
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“The financial costs associated with providing informal care to a person with dementia living in the community are substantial (Zhu et al., 2015; Jones et al., 2015; Jacobs et al., 2013; O’Shea and Monaghan, 2016b; Rattinger et al., 2015; Connolly et al., 2014; ADI, 2015).”
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“ADRD not only cause decline in cognitive and functional abilities of the individuals affected but also place considerable emotional and financial strain on their families and caregivers [ 2 , 3 ].”
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Cost‐effectiveness of vorasidenib in treatment of isocitrate dehydrogenase–mutated low‐grade glioma
Kessel, A. C., Kim, H., Brown, P. D., Lehrer, E. J., Laack, N. N., Mahajan, A., Yan, E., Schultz, S. E., Kizilbash, S. H., Neth, B. J., et al. (2026) · Cancer · doi:10.1002/cncr.70463
- Authors
- Rattinger, G. B., Schwartz, S., Mullins, C. D., Corcoran, C., Zuckerman, I. H., Sanders, C., Norton, M. C., Fauth, E. B., Leoutsakos, J. S., Lyketsos, C. G., & Tschanz, J. T.
- Affiliations
- Fairleigh Dickinson University (US)
- Utah State University (US)
- University of Maryland, Baltimore (US)
- Johns Hopkins University (US)
- Corresponding author
- Tschanz, JoAnn T.
- ORCID
- Venue
- Alzheimer's & Dementia
- Publisher
- Wiley
- Published
- 2015-01-19
- Volume
- 11
- Issue
- 8
- Pages
- 946-954
- ISSN
- 1552-5260 (ISSN-L)
- 1552-5279
- PMC
- PMC4506892
- OpenAlex
- W1997371461
- Cited by
- 71
- References
- 45
- Citations by year
- 2026: 3 · 2025: 7 · 2024: 5 · 2023: 4 · 2022: 9 · 2021: 8 · 2020: 10 · 2019: 7 · 2018: 8 · 2017: 4 · 2016: 3 · 2015: 2
- FWCI
- 4.59
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Alzheimer s & Dementia (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health (R01AG21136, R01AG11380)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Keywords
- dementia severity, informal care costs
- MeSH terms
- Age Factors, Aged, Aged, 80 and over, Dementia, Female, Patient Care, Humans, Longitudinal Studies, Male, Psychiatric Status Rating Scales, Retrospective Studies, Time Factors, United States, Caregivers, Outcome Assessment, Health Care, Age Distribution, Community Health Planning
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