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Cognition and Dementia

Evaluation of the SPAN intervention for people living with young-onset dementia in the community and their family caregivers: a randomized controlled trial

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Pages 275-284 | Received 06 May 2023, Accepted 12 Sep 2023, Published online: 29 Sep 2023

References

  • Bakker, C., de Vugt, M. E., van Vliet, D., Verhey, F., Pijnenburg, Y. A., Vernooij-Dassen, M. J., & Koopmans, R. T. (2014a). Unmet needs and health-related quality of life in young-onset dementia. The American Journal of Geriatric Psychiatry: Official Journal of the American Association for Geriatric Psychiatry, 22(11), 1121–1130. https://doi.org/10.1016/j.jagp.2013.02.006
  • Bakker, C., de Vugt, M. E., van Vliet, D., Verhey, F. R., Pijnenburg, Y. A., Vernooij-Dassen, M. J., & Koopmans, R. T. (2013a). Predictors of the time to institutionalization in young- versus late-onset dementia: Results from the Needs in Young Onset Dementia (NeedYD) study. Journal of the American Medical Directors Association, 14(4), 248–253. https://doi.org/10.1016/j.jamda.2012.09.011
  • Bakker, C., de Vugt, M. E., van Vliet, D., Verhey, F. R., Pijnenburg, Y. A., Vernooij-Dassen, M. J., & Koopmans, R. T. (2013b). The use of formal and informal care in early onset dementia: Results from the NeedYD study. The American Journal of Geriatric Psychiatry : official Journal of the American Association for Geriatric Psychiatry, 21(1), 37–45. https://doi.org/10.1016/j.jagp.2012.10.004
  • Bakker, C., de Vugt, M. E., van Vliet, D., Verhey, F. R., Pijnenburg, Y. A., Vernooij-Dassen, M. J., & Koopmans, R. T. (2014b). The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptoms: A two-year follow-up study. International Psychogeriatrics, 26(12), 1991–2000. https://doi.org/10.1017/s1041610213001476
  • Busted, L. M., Nielsen, D. S., & Birkelund, R. (2020). Sometimes it feels like thinking in syrup" - the experience of losing sense of self in those with young onset dementia. International Journal of Qualitative Studies on Health and Well-Being, 15(1), 1734277. https://doi.org/10.1080/17482631.2020.1734277
  • Cations, M., Withall, A., Horsfall, R., Denham, N., White, F., Trollor, J., Loy, C., Brodaty, H., Sachdev, P., Gonski, P., Demirkol, A., Cumming, R. G., & Draper, B. (2017). Why aren’t people with young onset dementia and their supporters using formal services? Results from the INSPIRED study. PloS One, 12(7), e0180935. https://doi.org/10.1371/journal.pone.0180935
  • Clare, L., Gamble, L. D., Martyr, A., Sabatini, S., Nelis, S. M., Quinn, C., Pentecost, C., Victor, C., Jones, R. W., Jones, I. R., Knapp, M., Litherland, R., Morris, R. G., Rusted, J. M., Thom, J. M., Collins, R., Henderson, C., & Matthews, F. E. (2022). Longitudinal trajectories of quality of life among people with mild-to-moderate dementia: A latent growth model approach with IDEAL cohort study data. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 77(6), 1037–1050. https://doi.org/10.1093/geronb/gbac022
  • Cramm, J. M., Hartgerink, J., De Vreede, P., Bakker, T., Steyerberg, E., Mackenbach, J., & Nieboer, A. P. (2012). The relationship between older adults’ self-management abilities, well-being and depression. European Journal of Ageing, 9(4), 353–360. https://doi.org/10.1007/s10433-012-0237-5
  • Cramm, J. M., Strating, M. M., de Vreede, P. L., Steverink, N., & Nieboer, A. P. (2012). Validation of the self-management ability scale (SMAS) and development and validation of a shorter scale (SMAS-S) among older patients shortly after hospitalisation. Health and Quality of Life Outcomes, 10(1), 9. https://doi.org/10.1186/1477-7525-10-9
  • Csipke, E., Moniz-Cook, E., Leung, P., Yates, L., Birt, L., Walton, H., Hogervorst, E., Mountain, G., Charlesworth, G., & Orrell, M. (2021). Feasibility and acceptability evaluation of the Promoting Independence in Dementia (PRIDE) intervention for living well with dementia. International Psychogeriatrics, 33(6), 601–614. https://doi.org/10.1017/s1041610220001386
  • De Jonghe, J., Kat, M. G., Kalisvaart, C., & Boelaarts, L. (2003). Neuropsychiatric inventory questionnaire (NPI-Q): A validity study of the Dutch form. Tijdschr Gerontol Geriatr, 34(2), 74–77.
  • de Vugt, M. E., Nicolson, N. A., Aalten, P., Lousberg, R., Jolle, J., & Verhey, F. R. (2005). Behavioral problems in dementia patients and salivary cortisol patterns in caregivers. The Journal of Neuropsychiatry and Clinical Neurosciences, 17(2), 201–207. https://doi.org/10.1176/jnp.17.2.201
  • de Vugt, M. E., Stevens, F., Aalten, P., Lousberg, R., Jaspers, N., Winkens, I., Jolles, J., & Verhey, F. R. J. (2004). Do caregiver management strategies influence patient behaviour in dementia? International Journal of Geriatric Psychiatry, 19(1), 85–92. https://doi.org/10.1002/gps.1044
  • Dutch Young Onset Dementia Knowledge Centre. (2015). Healthcare standard in young onset dementia (in Dutch).
  • Ettema, T. P., Dröes, R.-M., Lange, J. d., Mellenbergh, G. J., & Ribbe, M. W. (2005). A review of quality of life instruments used in dementia. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 14(3), 675–686. https://doi.org/10.1007/s11136-004-1258-0
  • Hendriks, S., Peetoom, K., Bakker, C., van der Flier, W. M., Papma, J. M., Koopmans, R., Verhey, F. R. J., de Vugt, M., Köhler, S., Withall, A., Parlevliet, J. L., Uysal-Bozkir, Ö., Gibson, R. C., Neita, S. M., Nielsen, T. R., Salem, L. C., Nyberg, J., Lopes, M. A., Dominguez, J. C., … Ruano, L. (2021). Global prevalence of young-onset dementia: A systematic review and meta-analysis. JAMA Neurology, 78(9), 1080–1090. https://doi.org/10.1001/jamaneurol.2021.2161
  • Herdman, M., Gudex, C., Lloyd, A., Janssen, M., Kind, P., Parkin, D., Bonsel, G., & Badia, X. (2011). Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 20(10), 1727–1736. https://doi.org/10.1007/s11136-011-9903-x
  • Hughes, C. P., Berg, L., Danziger, W., Coben, L. A., & Martin, R. L. (1982). A new clinical scale for the staging of dementia. The British Journal of Psychiatry: The Journal of Mental Science, 140(6), 566–572. https://doi.org/10.1192/bjp.140.6.566
  • Hughes, L., Farina, N., Page, T. E., Tabet, N., & Banerjee, S. (2021). Psychometric properties and feasibility of use of dementia specific quality of life instruments for use in care settings: A systematic review. International Psychogeriatrics, 33(9), 917–931. https://doi.org/10.1017/S1041610218002259
  • Kat, M. G., De Jonghe, J., Aalten, P., Kalisvaart, C., Dröes, R.-M., & Verhey, F. (2002). Neuropsychiatric symptoms of dementia: Psychometric aspects of the Dutch version of the Neuropsychiatric Inventory (NPI). Tijdschift Voor Gerontologie En Geriatrie, 33(4), 150–155.
  • Kaufer, D. I., Cummings, J. L., Ketchel, P., Smith, V., MacMillan, A., Shelley, T., Lopez, O. L., & DeKosky, S. T. (2000). Validation of the NPI-Q, a brief ­clinical form of the Neuropsychiatric Inventory. The Journal of Neuropsychiatry and Clinical Neurosciences, 12(2), 233–239. https://doi.org/10.1176/jnp.12.2.233
  • Kimura, N. R. S., Neto, J. P. S., Santos, R. L., Baptista, M. A. T., Portugal, G., Johannessen, A., Barca, M. L., Engedal, K., Laks, J., Rodrigues, V. M., & Dourado, M. C. N. (2019). Resilience in carers of people with young-onset Alzheimer disease. Journal of Geriatric Psychiatry and Neurology, 32(2), 59–67. https://doi.org/10.1177/0891988718824039
  • Leggett, A. N., & Kales, H. C. (2019). Applying rigor: Intervention studies for behavioral and psychological symptoms of dementia. The American Journal of Geriatric Psychiatry : official Journal of the American Association for Geriatric Psychiatry, 27(6), 590–592. https://doi.org/10.1016/j.jagp.2019.02.004
  • Leontjevas, R., Gerritsen, D. L., Koopmans, R. T., Smalbrugge, M., & Vernooij-Dassen, M. J. (2012). Process evaluation to explore internal and external validity of the "Act in Case of Depression" care program in nursing homes. Journal of the American Medical Directors Association, 13(5), 488.e481-488–488.e8. https://doi.org/10.1016/j.jamda.2012.03.006
  • Lin, C.-Y., Shih, P.-Y., & Ku, L.-J E. (2019). Activities of daily living function and neuropsychiatric symptoms of people with dementia and caregiver burden: The mediating role of caregiving hours. Archives of Gerontology and Geriatrics, 81, 25–30. https://doi.org/10.1016/j.archger.2018.11.009
  • Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (1999). Quality of life in Alzheimer’s disease: Patient and caregiver reports. Journal of Mental Health and Aging, 5, 21–32.
  • Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64(3), 510–519. https://doi.org/10.1097/00006842-200205000-00016
  • Lueken, U., Seidl, U., Völker, L., Schweiger, E., Kruse, A., & Schröder, J. (2007). Development of a short version of the Apathy Evaluation Scale specifically adapted for demented nursing home residents. The American Journal of Geriatric Psychiatry : official Journal of the American Association for Geriatric Psychiatry, 15(5), 376–385. https://doi.org/10.1097/JGP.0b013e3180437db3
  • Melis, R. J. F., van Hout, H. P. J., & Metzelthin, S. F. (2019). The older persons and informal caregivers survey minimum dataset (TOPICS-MDS). In D. Gu & M. E. Dupre (Eds.), Encyclopedia of gerontology and population aging (pp. 1–9). Springer International Publishing.
  • Pinquart, M., & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18(2), 250–267. https://doi.org/10.1037/0882-7974.18.2.250
  • Reisberg, B., Ferris, S. H., de Leon, M. J., & Crook, T. (1982). The Global Deterioration Scale for assessment of primary degenerative dementia. The American Journal of Psychiatry, 139(9), 1136–1139. https://doi.org/10.1176/ajp.139.9.1136
  • Roach, P., & Drummond, N. (2014). It’s nice to have something to do’: Early-onset dementia and maintaining purposeful activity. Journal of Psychiatric and Mental Health Nursing, 21(10), 889–895. https://doi.org/10.1111/jpm.12154
  • Rogers, E. M., & Singhal, A. (2003). Empowerment and communication: Lessons learned from organizing for social change. Annals of the International Communication Association, 27(1), 67–85. https://doi.org/10.1080/23808985.2003.11679022
  • Schuurmans, H., Steverink, N., Frieswijk, N., Buunk, B. P., Slaets, J. P., & Lindenberg, S. (2005). How to measure self-management abilities in older people by self-report. The development of the SMAS-30. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 14(10), 2215–2228. https://doi.org/10.1007/s11136-005-8166-9
  • Steverink, N. (2009). Self-Management Ability Scale (SMAS-30), version 2, manual.
  • Steverink, N., Lindenberg, S., & Slaets, J. P. J. (2005). How to understand and improve older people’s self-management of wellbeing. European Journal of Ageing, 2(4), 235–244. https://doi.org/10.1007/s10433-005-0012-y
  • Stoner, C. R., Orrell, M., Long, M., Csipke, E., & Spector, A. (2017). The development and preliminary psychometric properties of two positive psychology outcome measures for people with dementia: The PPOM and the EID-Q. BMC Geriatrics, 17(1), 72. https://doi.org/10.1186/s12877-017-0468-6
  • Stoner, C. R., Orrell, M., & Spector, A. (2018). Psychometric properties and factor analysis of the engagement and independence in dementia questionnaire (EID-Q). Dementia and Geriatric Cognitive Disorders, 46(3-4), 119–127. https://doi.org/10.1159/000488484
  • Teerenstra, S., Eldridge, S., Graff, M., de Hoop, E., & Borm, G. F. (2012). A simple sample size formula for analysis of covariance in cluster randomized trials. Statistics in Medicine, 31(20), 2169–2178. https://doi.org/10.1002/sim.5352
  • Teunisse, S., & Derix, M. M. (1991). Measurement of activities of daily living in patients with dementia living at home: Development of a questionnaire. Tijdschrift Voor Gerontologie En Geriatrie, 22(2), 53–59.
  • Teunisse, S., & Derix, M. M. (1997). The interview for deterioration in daily living activities in dementia: Agreement between primary and secondary caregivers. International Psychogeriatrics, 9 (S1), 155–162. https://doi.org/10.1017/s1041610297004845
  • Thorgrimsen, L., Selwood, A., Spector, A., Royan, L., de Madariaga Lopez, M., Woods, R., & Orrell, M. (2003). Whose quality of life is it anyway?: The validity and reliability of the Quality of Life-Alzheimer’s Disease (QoL-AD) scale. Alzheimer Disease and Associated Disorders, 17(4), 201–208. https://doi.org/10.1097/00002093-200310000-00002
  • van Corven, C. T. M., Bielderman, A., Wijnen, M., Leontjevas, R., Lucassen, P. L. B. J., Graff, M. J. L., & Gerritsen, D. L. (2021). Defining empowerment for older people living with dementia from multiple perspectives: A qualitative study. International Journal of Nursing Studies, 114, 103823. https://doi.org/10.1016/j.ijnurstu.2020.103823
  • van de Veen, D., Bakker, C., Peetoom, K., Pijnenburg, Y., Papma, J. M., de Vugt, M., & Koopmans, R. (2021). An integrative literature review on the nomenclature and definition of dementia at a young age. Journal of Alzheimer’s Disease: JAD, 83(4), 1891–1916. https://doi.org/10.3233/JAD-210458
  • Van der Lee, J., Bakker, T. J., Duivenvoorden, H. J., & Dröes, 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
  • van Vliet, D., de Vugt, M. E., Bakker, C., Koopmans, R. T., & Verhey, F. R. (2010). Impact of early onset dementia on caregivers: A review. International Journal of Geriatric Psychiatry, 25(11), 1091–1100. https://doi.org/10.1002/gps.2439
  • Van Vliet, D., Persoon, A., Bakker, C., Koopmans, R., de Vugt, M. E., Bielderman, A., & Gerritsen, D. L. (2017). Feeling useful and engaged in daily life: Exploring the experiences of people with young-onset dementia. International Psychogeriatrics, 29(11), 1889–1898. https://doi.org/10.1017/S1041610217001314
  • Verlinden, V. J., van der Geest, J. N., de Bruijn, R. F., Hofman, A., Koudstaal, P. J., & Ikram, M. A. (2016). Trajectories of decline in cognition and daily functioning in preclinical dementia. Alzheimer’s & Dementia : The Journal of the Alzheimer’s Association, 12(2), 144–153. https://doi.org/10.1016/j.jalz.2015.08.001
  • 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