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A longitudinal evaluation of family caregivers’ willingness to pay for an in-home nonpharmacologic intervention for people living with dementia: results from a randomized trial

Published online by Cambridge University Press:  24 March 2021

Eric Jutkowitz Open the ORCID record for Eric Jutkowitz [Opens in a new window] ,
Laura T. Pizzi ,
Jonah Popp ,
Katherine K. Prioli ,
Danny Scerpella ,
Katherine Marx ,
Quincy Samus ,
Catherine Verrier Piersol  and
Laura N. Gitlin
Eric Jutkowitz*
Affiliation:
Department of Health Services, Policy & Practice, Brown University School of Public Health, Providence, RI, USA Providence Veterans Affairs (VA) Medical Center, Center of Innovation in Long Term Services and Supports, Providence, RI, USA
Laura T. Pizzi
Affiliation:
Center for Health Outcomes, Policy, and Economics, Rutgers University Ernest Mario School of Pharmacy, Piscataway, NJ, USA
Jonah Popp
Affiliation:
Department of Health Services, Policy & Practice, Brown University School of Public Health, Providence, RI, USA
Katherine K. Prioli
Affiliation:
Center for Health Outcomes, Policy, and Economics, Rutgers University Ernest Mario School of Pharmacy, Piscataway, NJ, USA
Danny Scerpella
Affiliation:
Johns Hopkins University Center for Innovative Care in Aging, Baltimore, MD, USA
Katherine Marx
Affiliation:
Johns Hopkins University Center for Innovative Care in Aging, Baltimore, MD, USA
Quincy Samus
Affiliation:
Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, USA
Catherine Verrier Piersol
Affiliation:
Thomas Jefferson University, Department of Occupational Therapy, Philadelphia, PA, USA
Laura N. Gitlin
Affiliation:
College of Nursing and Health Professions, Drexel University, Philadelphia, PA, USA
*
Correspondence should be addressed to: Erin Jutkowitz, Brown University School of Public Health, 121 South Main Street, Providence, Rhode Island 02903, 6th Floor, Room 628, USA. Phone: 401 863 2060. E-mail: eric_jutkowitz@brown.edu
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Abstract

Objective:

To determine the willingness-to-pay (WTP) of family caregivers to learn care strategies for persons living with dementia (PLwD).

Design:

Randomized clinical trial.

Setting:

Community-dwelling PLwD and their caregivers (dyads) in Maryland and Washington, DC.

Participants:

250 dyads.

Intervention:

Tailored Activity Program (TAP) compared to attention control. TAP provides activities tailored to the PLwD and instructs caregivers in their use.

Measurement:

At baseline, 3 and 6 months, caregivers were asked their WTP per session for an 8-session 3-month in-home nonpharmacologic intervention to address behavioral symptoms and functional dependence.

Results:

At baseline, 3 and 6 months, caregivers assigned to TAP were willing to pay $26.10/session (95%CI:$20.42, $33.00), $28.70 (95%CI:$19.73, $39.30), and $22.79 (95%CI: $16.64, $30.09), respectively; attention control caregivers were willing to pay $37.90/session (95%CI: $27.10, $52.02), $30.92 (95%CI: $23.44, $40.94), $27.44 (95%CI: $20.82, $35.34), respectively. The difference in baseline to 3 and 6 months change in WTP between TAP and the attention control was $9.58 (95%CI: −$5.00, $25.47) and $7.15 (95%CI: −$5.72, $21.81). The difference between TAP and attention control in change in the proportion of caregivers willing to pay something from baseline to 3 and 6 months was −12% (95%CI: −28%, −5%) and −7% (95%CI:−25%, −11%), respectively. The difference in change in WTP, among caregivers willing to pay something, between TAP and attention control from baseline to 3 and 6 months was $17.93 (95%CI: $0.22, $38.30) and $11.81 (95%CI: −$2.57, $28.17).

Conclusions:

Family caregivers are willing to pay more for an intervention immediately following participation in a program similar to which they were asked to value.

Keywords

dementiacaregivinglong-term care
Type
Original Research Article
Information
International Psychogeriatrics , Volume 33 , Special Issue 4: Issue Theme: Caring for Caregivers of People with Dementia , April 2021 , pp. 419 - 428
Copyright
© International Psychogeriatric Association 2021

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References

Blumenschein, K., Johannesson, M., Yokoyama, K., and Freeman, P. (2001). Hypothetical versus real willingness to pay in the health care sector: results from a field experiment. Value in Health, 4, 79–79.CrossRefGoogle Scholar
Boustani, M., Alder, C. A., Solid, C. A. and Reuben, D. (2019). An alternative payment model to support widespread use of collaborative dementia care models. Health Affairs (Millwood), 38, 54–59.CrossRefGoogle ScholarPubMed
Bozdogan, H. (1987). Model selection and Akaike’s Information Criterion (AIC): the general theory and its analytical extensions. Psychometrika, 52, 345–370.CrossRefGoogle Scholar
Burgdorf, J., Roth, D. L., Riffin, C. and Wolff, J. L. (2019). Factors Associated with Receipt of Training Among Caregivers of Older Adults. JAMA Internal Medicine, 179, 833–835.CrossRefGoogle ScholarPubMed
Callahan, C. M. et al. (2006). Effectiveness of collaborative care for older adults with Alzheimer disease in primary care: a randomized controlled trial. The Journal of the American Medical Association, 295, 2148–2157.CrossRefGoogle ScholarPubMed
Chiu, L., Tang, K. Y., Liu, Y. H., Shyu, W. C. and Chang, T. P. (1998). Willingness of families caring for victims of dementia to pay for nursing home care: results of a pilot study in Taiwan. Journal of Management in Medicine, 12, 349–360, 321.CrossRefGoogle ScholarPubMed
de Medeiros, K, Robert, P, Gauthier, S, Stella, F, Politis, A, Leoutsakos, J, Taragano, F, Kremer, J, Brugnolo, A, Porsteinsson, AP, Geda, YE, Brodaty, H, Gazdag, G, Cummings, J, Lyketsos, C. (2010). The Neuropsychiatric Inventory-Clinician rating scale (NPI-C): reliability and validity of a revised assessment of neuropsychiatric symptoms in dementia. International Psychogeriatrics, 22, 984–994.CrossRefGoogle ScholarPubMed
Diggle, P., Diggle, P. J., Heagerty, P., Heagerty, P. J., Liang, K. Y. and Zeger, S. (2002). Analysis of longitudinal data. Oxford, UK: Oxford University Press.Google Scholar
Efron, B. and Tibshirani, R. J. (1994). An introduction to the bootstrap. Boca Raton, FL: CRC Press.CrossRefGoogle Scholar
Folstein, M. F., Folstein, S. E. and McHugh, P. R. (1975). Mini-Mental State: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198.CrossRefGoogle ScholarPubMed
Gaugler, J. E. and Kane, R. L. (2015). Family caregiving in the new normal. London, England: Academic Press.Google Scholar
Gervès-Pinquié, C., Bellanger, M. M. and Ankri, J. (2014). Willingness to pay for informal care in France: the value of funding support interventions for caregivers. Health Economics Review, 4, 34.CrossRefGoogle ScholarPubMed
Gitlin, L. N et al. (In press - b). Effects of the Tailored Activity Program (TAP) on dementia-related symptoms, health events and caregiver wellbeing: a randomized controlled trial. BMC Geriatrics.Google Scholar
Gitlin, L. N. et al. (2005). Caregiver appraisals of functional dependence in individuals with dementia and associated caregiver upset: psychometric properties of a new scale and response patterns by caregiver and care recipient characteristics. Journal of Aging and Health, 17, 148–171.CrossRefGoogle ScholarPubMed
Gitlin, L. N. et al. (2016b). Reducing neuropsychiatric symptoms in persons with dementia and associated burden in family caregivers using tailored activities: design and methods of a randomized clinical trial. Contemporary Clinical Trials, 49, 92–102.CrossRefGoogle ScholarPubMed
Gitlin, L. N., Hodgson, N., Jutkowitz, E. and Pizzi, L. (2010a). The cost-effectiveness of a nonpharmacologic intervention for individuals with dementia and family caregivers: the tailored activity program. The American Journal of Geriatric Psychiatry, 18, 510–519.CrossRefGoogle ScholarPubMed
Gitlin, L. N., Hodgson, N., Jutkowitz, E. and Pizzi, L. (2010c). The cost-effectiveness of a nonpharmacologic intervention for individuals with dementia and family caregivers: the tailored activity program. The American Journal of Geriatric Psychiatry, 18, 510–519.CrossRefGoogle ScholarPubMed
Gitlin, L. N., Hodgson, N. A. and Choi, S. S. W. (2016a). Home-based interventions targeting persons with dementia: what is the evidence and where do we go from here? In: Boltz, M. and Galvin, J. E. (Eds.), Dementia Care, An Evidence-Based Approach (pp. 167–188). Switzerland: Springer International Publishing.Google Scholar
Gitlin, L. N., Kales, H. C. and Lyketsos, C. G. (2012). Nonpharmacologic management of behavioral symptoms in dementia. The Journal of the American Medical Association, 308, 2020–2029.CrossRefGoogle ScholarPubMed
Gitlin, L. N. and Rose, K. (2016). Impact of caregiver readiness on outcomes of a nonpharmacological intervention to address behavioral symptoms in persons with dementia. International Journal of Geriatric Psychiatry, 31, 1056–1063.CrossRefGoogle ScholarPubMed
Gitlin, L. N., Winter, L., Dennis, M. P., Hodgson, N. and Hauck, W. W. (2010). Targeting and Managing Behavioral Symptoms in Individuals with Dementia: A Randomized Trial of a Nonpharmacological Intervention. Journal of the American Geriatrics Society, 58, 1465–1474.CrossRefGoogle ScholarPubMed
Gitlin, L. N., Winter, L., Dennis, M. P., Hodgson, N. and Hauck, W. W. (2010b). A biobehavioral home-based intervention and the well-being of patients with dementia and their caregivers: the COPE randomized trial. The Journal of the American Medical Association, 304, 983–991.CrossRefGoogle ScholarPubMed
Gitlin, L.N, Hodgson, N., Choi, S. and Marx, K. A. (In Press - a). Interventions to preserve functional activities in persons with dementia: closing the gap between what a person “Does Do” and what they “Can Do”. In: Parks, R. W., Zec, R. F., Bondi, M. W., and Jefferson, A. L (Eds.), Neuropsychology of Alzheimer’s Disease and Other Dementias. Oxford: Oxford University Press.Google Scholar
Gustavsson, A., Jonsson, L., McShane, R., Boada, M., Wimo, A. and Zbrozek, A. S. (2010). Willingness-to-pay for reductions in care need: estimating the value of informal care in Alzheimer’s disease. International Journal of Geriatric Psychiatry, 25, 622–632.Google ScholarPubMed
Jutkowitz, E. et al. (2019). Dementia family caregivers’ willingness to pay for an in-home program to reduce behavioral symptoms and caregiver stress. Pharmacoeconomics, 37, 563–572.CrossRefGoogle ScholarPubMed
Jutkowitz, E., Gaugler, J. E., Trivedi, A. N., Mitchell, L. L. and Gozalo, P. (2020a). Family caregiving in the community up to 8-years after onset of dementia. BMC Geriatrics, 20, 216.CrossRefGoogle ScholarPubMed
Jutkowitz, E., Gozalo, P., Trivedi, A., Mitchell, L. and Gaugler, J. E. (2020b). The effect of physical and cognitive impairments on caregiving. Medical Care, 58, 601–609.CrossRefGoogle ScholarPubMed
Jutkowitz, E., Kane, R. L., Gaugler, J. E., MacLehose, R. F., Dowd, B. and Kuntz, K. M. (2017a). Societal and family lifetime cost of dementia: implications for policy. Journal of the American Geriatrics Society, 65, 2169–2175.CrossRefGoogle ScholarPubMed
Jutkowitz, E., MacLehose, R. F., Gaugler, J. E., Dowd, B., Kuntz, K. M. and Kane, R. L. (2017b). Risk factors associated with cognitive, functional, and behavioral trajectories of newly diagnosed dementia patients. The Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 72, 251–258.CrossRefGoogle ScholarPubMed
Kahan, B. C., Jairath, V., Dore, C. J. and Morris, T. P. (2014). The risks and rewards of covariate adjustment in randomized trials: an assessment of 12 outcomes from 8 studies. Trials, 15, 139.CrossRefGoogle ScholarPubMed
Kales, H. C., Gitlin, L. N. and Lyketsos, C. G. (2019). When less is more, but still not enough: why focusing on limiting antipsychotics in people with dementia is the wrong policy imperative. The Journal of the American Medical Directors Association, 20, 1074–1079.CrossRefGoogle Scholar
König, M. and Wettstein, A. (2002). Caring for relatives with dementia: willingness-to-pay for a reduction in caregiver’s burden. Expert Review of Pharmacoeconomics & Outcomes Research, 2, 535–547.CrossRefGoogle ScholarPubMed
Langa, K. M. et al. (2001). National estimates of the quantity and cost of informal caregiving for the elderly with dementia. Journal of General Internal Medicine, 16, 770–778.CrossRefGoogle ScholarPubMed
Little, R. J. et al. (2012). The prevention and treatment of missing data in clinical trials. New England Journal of Medicine, 367, 1355–1360.CrossRefGoogle ScholarPubMed
Lyketsos, C. G. et al. (2006). Task Force of American Association for Geriatric, P., Position statement of the American Association for Geriatric Psychiatry regarding principles of care for patients with dementia resulting from Alzheimer disease. The American Journal of Geriatric Psychiatry, 14, 561–572.CrossRefGoogle Scholar
Min, Y. and Agresti, A. (2005). Random effect models for repeated measures of zero-inflated count data. Statistical Modelling, 5, 1–19.CrossRefGoogle Scholar
Schulz, R., Beach, S. R., Matthews, J. T., Courtney, K., De Vito Dabbs, A. and Mecca, L. P. (2016). Caregivers’ Willingness to Pay for Technologies to Support Caregiving. The Gerontologist, 56, 817–829.CrossRefGoogle ScholarPubMed
National Academies of Sciences, Engineering, and Medicine. (2016). Families caring for an aging America. In: Schulz, R. and Eden, J. (Eds.), Families Caring for an Aging America. Washington, DC: National Academies Press.CrossRefGoogle Scholar
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