Self- reported and informal caregiver proxy-reported met needs in persons living with dementia are associated with lower health-related quality of life: a dyadic, cross-sectional study

References

• Black, B. S., Johnston, D., Rabins, P. V., Morrison, A., Lyketsos, C., & Samus, Q. M. (2013). Unmet needs of community-residing persons with dementia and their informal caregivers: Findings from the maximizing independence at home study. Journal of the American Geriatrics Society, 61(12), 2087–2095. https://doi.org/10.1111/jgs.12549
   PubMed Web of Science ®Google Scholar
• Carvacho, R., Carrasco, M., Lorca, M. B. F., & Miranda-Castillo, C. (2021). Met and unmet needs of dependent older people according to the Camberwell Assessment of Need for the Elderly (CANE): A scoping review. Revista Espanola de Geriatria y Gerontologia, 56(4), 225–235. https://doi.org/10.1016/j.regg.2021.02.004
   PubMedGoogle Scholar
• Cheng, S. T. (2017). Dementia Caregiver Burden: A Research Update and Critical Analysis. Current Psychiatry Reports, 19(9), 64. https://doi.org/10.1007/s11920-017-0818-2
   PubMed Web of Science ®Google Scholar
• Cook, W. L., & Kenny, D. A. (2005). The actor-partner interdependence model: A model of bidirectional effects in developmental studies. International Journal of Behavioral Development, 29(2), 101–109. https://doi.org/10.1080/01650250444000405
   Web of Science ®Google Scholar
• Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A., & Gornbein, J. (1994). The Neuropsychiatric Inventory: Comprehensive assessment of psychopathology in dementia. Neurology, 44(12), 2308–2314. https://doi.org/10.1212/wnl.44.12.2308
   PubMed Web of Science ®Google Scholar
• Curnow, E., Rush, R., Maciver, D., Gorska, S., & Forsyth, K. (2021). Exploring the needs of people with dementia living at home reported by people with dementia and informal caregivers: A systematic review and Meta-analysis. Aging & Mental Health, 25(3), 397–407. https://doi.org/10.1080/13607863.2019.1695741
   PubMed Web of Science ®Google Scholar
• Folstein, M. F., Folstein, S. E., & 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(3), 189–198. https://doi.org/10.1016/0022-3956(75)90026-6
   PubMed Web of Science ®Google Scholar
• Goldberg, D. P., & Hillier, V. F. (1979). A scaled version of the General Health Questionnaire. Psychological Medicine, 9(1), 139–145. https://doi.org/10.1017/s0033291700021644
   PubMed Web of Science ®Google Scholar
• Gräske, J., Meyer, S., & Wolf-Ostermann, K. (2014). Quality of life ratings in dementia care? a cross-sectional study to identify factors associated with proxy-ratings. Health and Quality of Life Outcomes, 12, 177. https://doi.org/10.1186/s12955-014-0177-1
   PubMed Web of Science ®Google Scholar
• Griffiths, A. W., Smith, S. J., Martin, A., Meads, D., Kelley, R., & Surr, C. A. (2020). Exploring self-report and proxy-report quality-of-life measures for people living with dementia in care homes. Quality of Life Research, 29(2), 463–472. https://doi.org/10.1007/s11136-019-02333-3
   PubMed Web of Science ®Google Scholar
• Hussain, H., Keetharuth, A., Rowen, D., & Wailoo, A. (2022). Convergent validity of EQ-5D with core outcomes in dementia: A systematic review. Health and Quality of Life Outcomes, 20(1), 152. https://doi.org/10.1186/s12955-022-02062-1
   PubMed Web of Science ®Google Scholar
• Jones, R. W., Romeo, R., Trigg, R., Knapp, M., Sato, A., King, D., Niecko, T., & Lacey, L; DADE Investigator Group. (2015). Dependence in Alzheimer’s disease and service use costs, quality of life, and caregiver burden: The DADE study. Alzheimer’s & Dementia, 11(3), 280–290. https://doi.org/10.1016/j.jalz.2014.03.001
   PubMed Web of Science ®Google Scholar
• Keetharuth, A. D., Hussain, H., Rowen, D., & Wailoo, A. (2022). Assessing the psychometric performance of EQ-5D-5L in dementia: A systematic review. Health and Quality of Life Outcomes, 20(1), 139. https://doi.org/10.1186/s12955-022-02036-3
   PubMed Web of Science ®Google Scholar
• Kerpershoek, L., de Vugt, M., Wolfs, C., Woods, B., Jelley, H., Orrell, M., Stephan, A., Bieber, A., Meyer, G., Selbaek, G., Handels, R., Wimo, A., Hopper, L., Irving, K., Marques, M., Gonçalves-Pereira, M., Portolani, E., Zanetti, O., & Verhey, F; Actifcare Consortium. (2018). Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice. Aging & Mental Health, 22(7), 897–902. https://doi.org/10.1080/13607863.2017.1390732
   PubMed Web of Science ®Google Scholar
• Kim, H., Chang, M., Rose, K., & Kim, S. (2012). Predictors of caregiver burden in caregivers of individuals with dementia. Journal of Advanced Nursing, 68(4), 846–855. https://doi.org/10.1111/j.1365-2648.2011.05787.x
   PubMed Web of Science ®Google Scholar
• Lamers, L. M., Stalmeier, P. F., McDonnell, J., Krabbe, P. F., & van Busschbach, J. J. (2005). [Measuring the quality of life in economic evaluations: The Dutch EQ-5D tariff]. Nederlands Tijdschrift Voor Geneeskunde, 149(28), 1574–1578.
   PubMed Web of Science ®Google Scholar
• Lindt, N., van Berkel, J., & Mulder, B. C. (2020). Determinants of overburdening among informal carers: A systematic review. BMC Geriatrics, 20(1), 304. https://doi.org/10.1186/s12877-020-01708-3
   PubMed Web of Science ®Google Scholar
• MacNeil Vroomen, J., Van Mierlo, L. D., van de Ven, P. M., Bosmans, J. E., van den Dungen, P., Meiland, F. J. M., Dröes, R.-M., Moll van Charante, E. P., van der Horst, H. E., de Rooij, S. E., & van Hout, H. P. J. (2012). Comparing Dutch case management care models for people with dementia and their caregivers: The design of the COMPAS study. BMC Health Services Research, 12, 132. https://doi.org/10.1186/1472-6963-12-132
   PubMed Web of Science ®Google Scholar
• Mazurek, J., Szcześniak, D., Urbańska, K., Dröes, R.-M., & Rymaszewska, J. (2019). Met and unmet care needs of older people with dementia living at home: Personal and informal carers’ perspectives. Dementia (London, England), 18(6), 1963–1975. https://doi.org/10.1177/1471301217733233
   PubMedGoogle Scholar
• Miranda-Castillo, C., Woods, B., Galboda, K., Oomman, S., Olojugba, C., & Orrell, M. (2010). Unmet needs, quality of life and support networks of people with dementia living at home. Health and Quality of Life Outcomes, 8, 132. https://doi.org/10.1186/1477-7525-8-132
   PubMed Web of Science ®Google Scholar
• Monin, J. K., Jorgensen, T. D., & MacNeil Vroomen, J. L. (2020). Self-Reports and Caregivers’ Proxy Reports of Unmet Needs of Persons With Dementia: Implications for Both Partners’ Health-Related Quality of Life. The American Journal of Geriatric Psychiatry, 28(3), 363–367. https://doi.org/10.1016/j.jagp.2019.10.006
   PubMed Web of Science ®Google Scholar
• Muthén, L. K., Muthén, B. O. (2017). Mplus V 8.8 User guide. https://www.statmodel.com/download/usersguide/MplusUserGuideVer_8.pdf
   Google Scholar
• O’Shea, E., Hopper, L., Marques, M., Gonçalves-Pereira, M., Woods, B., Jelley, H., Verhey, F., Kerpershoek, L., Wolfs, C., de Vugt, M., Stephan, A., Bieber, A., Meyer, G., Wimo, A., Michelet, M., Selbaek, G., Portolani, E., Zanetti, O., … Irving, K; Consortium, A. (2020). A comparison of self and proxy quality of life ratings for people with dementia and their carers: A European prospective cohort study. Aging & Mental Health, 24(1), 162–170. https://doi.org/10.1080/13607863.2018.1517727
   PubMed Web of Science ®Google Scholar
• Reinhardt, J. P., Boerner, K., & Horowitz, A. (2006). Good to have but not to use: Differential impact of perceived and received support on well-being. Journal of Social and Personal Relationships, 23(1), 117–129. https://doi.org/10.1177/0265407506060182
   Web of Science ®Google Scholar
• Riedijk, S. R., De Vugt, M. E., Duivenvoorden, H. J., Niermeijer, M. F., Van Swieten, J. C., Verhey, F. R., & Tibben, A. (2006). Caregiver burden, health-related quality of life and coping in dementia caregivers: A comparison of frontotemporal dementia and Alzheimer’s disease. Dementia and Geriatric Cognitive Disorders, 22(5-6), 405–412. https://doi.org/10.1159/000095750
   PubMed Web of Science ®Google Scholar
• Römhild, J., Fleischer, S., Meyer, G., Stephan, A., Zwakhalen, S., Leino-Kilpi, H., Zabalegui, A., Saks, K., Soto-Martin, M., Sutcliffe, C., Rahm Hallberg, I., … Berg, A, Consortium, R. (2018). Inter-rater agreement of the Quality of Life-Alzheimer’s Disease (QoL-AD) self-rating and proxy rating scale: Secondary analysis of RightTimePlaceCare data. Health and Quality of Life Outcomes, 16(1), 131. https://doi.org/10.1186/s12955-018-0959-y
   PubMedGoogle Scholar
• Thomas, P., Lalloué, F., Preux, P.-M., Hazif-Thomas, C., Pariel, S., Inscale, R., Belmin, J., & Clément, J.-P. (2006). Dementia patients caregivers quality of life: The PIXEL study. International Journal of Geriatric Psychiatry, 21(1), 50–56. https://doi.org/10.1002/gps.1422
   PubMed Web of Science ®Google Scholar
• van der Lee, J., Bakker, T. J. E. M., Duivenvoorden, H. J., & Droes, R. M. (2014). Multivariate models of subjective caregiver burden in dementia: A systematic review. Ageing Research Reviews, 15, 76–93. https://doi.org/10.1016/j.arr.2014.03.003
   PubMed Web of Science ®Google Scholar
• van der Roest, H. G., Meiland, F. J. M., Comijs, H. C., Derksen, E., Jansen, A. P. D., van Hout, H. P. J., Jonker, C., & Dröes, R.-M. (2009). What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International Psychogeriatrics, 21(5), 949–965. https://doi.org/10.1017/S1041610209990147
   PubMed Web of Science ®Google Scholar
• van der Roest, H. G., Meiland, F. J. M., Maroccini, R., Comijs, H. C., Jonker, C., & Droes, R. M. (2007). Subjective needs of people with dementia: A review of the literature. International Psychogeriatrics, 19(3), 559–592. https://doi.org/10.1017/S1041610206004716
   PubMed Web of Science ®Google Scholar
• van der Roest, H. G., Meiland, F. J., van Hout, H. P., Jonker, C., & Droes, R. M. (2008). Validity and reliability of the Dutch version of the Camberwell Assessment of Need for the Elderly in community-dwelling people with dementia. International Psychogeriatrics, 20(6), 1273–1290. https://doi.org/10.1017/S1041610208007400
   PubMed Web of Science ®Google Scholar
• Vernooij-Dassen, M. J., Felling, A. J., Brummelkamp, E., Dauzenberg, M. G., van den Bos, G. A., & Grol, R. (1999). Assessment of caregiver’s competence in dealing with the burden of caregiving for a dementia patient: A Short Sense of Competence Questionnaire (SSCQ) suitable for clinical practice. Journal of the American Geriatrics Society, 47(2), 256–257. https://doi.org/10.1111/j.1532-5415.1999.tb04588.x
   PubMed Web of Science ®Google Scholar
• Williams, J., Lyons, B., & Rowland, D. (1997). Unmet long-term care needs of elderly people in the community: A review of the literature. Home Health Care Services Quarterly, 16(1-2), 93–119. https://doi.org/10.1300/J027v16n01_07
   PubMedGoogle Scholar
• Xu, L., Liu, Y. W., He, H., Fields, N. L., Ivey, D. L., & Kan, C. (2021). Caregiving intensity and caregiver burden among caregivers of people with dementia: The moderating roles of social support. Archives of Gerontology and Geriatrics, 94, 104334. https://doi.org/10.1016/j.archger.2020.104334
   PubMed Web of Science ®Google Scholar