The development and feasibility evaluation of a program to identify and manage apathy in people with dementia: the SABA program

References

• Appelhof, B., Bakker, C., Van Duinen-van den Ijssel, J. C. L., Zwijsen, S. A., Smalbrugge, M., Verhey, F. R. J., de Vugt, M. E., Zuidema, S. U., & Koopmans, R. (2017). The determinants of quality of life of nursing home residents with young-onset dementia and the differences between dementia subtypes. Dementia and Geriatric Cognitive Disorders, 43(5–6), 320–329. https://doi.org/10.1159/000477087
   PubMed Web of Science ®Google Scholar
• Appelhof, B., Bakker, C., van Duinen-van den, I. J. C. L., Zwijsen, S. A., Smalbrugge, M., Verhey, F. R. J., de Vugt, M. E., Zuidema, S. U., & Koopmans, R. (2018). Process evaluation of an intervention for the management of neuropsychiatric symptoms in young-onset dementia. Journal of the American Medical Directors Association, 19(8), 663–671. https://doi.org/10.1016/j.jamda.2018.02.013
   PubMed Web of Science ®Google Scholar
• Azhar, L., Kusumo, R. W., Marotta, G., Lanctôt, K. L., & Herrmann, N. (2022). Pharmacological management of apathy in dementia. CNS Drugs, 36(2), 143–165. https://doi.org/10.1007/s40263-021-00883-0
   PubMed Web of Science ®Google Scholar
• Bartholomew, L. K., Parcel, G. S., Kok, G., Gottlieb, N. H., & Fernández, M. E. (2016). Planning health promotion programs: An intervention mapping approach (4th ed.). Jossey-Bass/Wiley.
   Google Scholar
• Bowen, D. J., Kreuter, M., Spring, B., Cofta-Woerpel, L., Linnan, L., Weiner, D., Bakken, S., Kaplan, C. P., Squiers, L., Fabrizio, C., & Fernandez, M. (2009). How we design feasibility studies. American Journal of Preventive Medicine, 36(5), 452–457. https://doi.org/10.1016/j.amepre.2009.02.002
   PubMed Web of Science ®Google Scholar
• Chang, C. Y. M., Baber, W., Dening, T., & Yates, J. (2021). He just doesn’t want to get out of the chair and do it": The impact of apathy in people with dementia on their carers. International Journal of Environmental Research and Public Health, 18(12), 6317. https://doi.org/10.3390/ijerph18126317
   PubMed Web of Science ®Google Scholar
• Dening, T., Baber, W., Chang, M., & Yates, J. (2022). The struggle of apathy in dementia. Aging & Mental Health, 26(10), 1909–1911. https://doi.org/10.1080/13607863.2021.2008309
   PubMed Web of Science ®Google Scholar
• Dufournet, M., Dauphinot, V., Moutet, C., Verdurand, M., Delphin-Combe, F., Krolak-Salmon, P., & Group, M; MEMORA Group. (2019). Impact of cognitive, functional, behavioral disorders, and caregiver burden on the risk of nursing home placement. Journal of the American Medical Directors Association, 20(10), 1254–1262. https://doi.org/10.1016/j.jamda.2019.03.027
   PubMed Web of Science ®Google Scholar
• Elo, S., & Kyngas, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62(1), 107–115. https://doi.org/10.1111/j.1365-2648.2007.04569.x
   PubMed Web of Science ®Google Scholar
• Gerritsen, D. L., Steverink, N., Frijters, D. H., Hirdes, J. P., Ooms, M. E., & Ribbe, M. W. (2008). A revised index for social engagement for long-term care. Journal of Gerontological Nursing, 34(4), 40–48. https://doi.org/10.3928/00989134-20080401-04
   PubMed Web of Science ®Google Scholar
• Goris, E. D., Ansel, K. N., & Schutte, D. L. (2016). Quantitative systematic review of the effects of non-pharmacological interventions on reducing apathy in persons with dementia. Journal of Advanced Nursing, 72(11), 2612–2628. https://doi.org/10.1111/jan.13026
   PubMed Web of Science ®Google Scholar
• Groot Kormelinck, C. M., Janus, S. I. M., Smalbrugge, M., Gerritsen, D. L., & Zuidema, S. U. (2021). Systematic review on barriers and facilitators of complex interventions for residents with dementia in long-term care. International Psychogeriatrics, 33(9), 873–889. https://doi.org/10.1017/s1041610220000034
   PubMed Web of Science ®Google Scholar
• Hoek, L. J., van Haastregt, J. C., de Vries, E., Backhaus, R., Hamers, J. P., & Verbeek, H. (2021). Partnerships in nursing homes: How do family caregivers of residents with dementia perceive collaboration with staff? Dementia (London, England), 20(5), 1631–1648. https://doi.org/10.1177/1471301220962235
   PubMedGoogle Scholar
• Johansson, A., Ruzin, H. O., Graneheim, U. H., & Lindgren, B. M. (2014). Remaining connected despite separation - former family caregivers’ experiences of aspects that facilitate and hinder the process of relinquishing the care of a person with dementia to a nursing home. Aging & Mental Health, 18(8), 1029–1036. https://doi.org/10.1080/13607863.2014.908456
   PubMed Web of Science ®Google Scholar
• Kieboom, R. V. D., Mark, R., Snaphaan, L., Assen, M. V., & Bongers, I. (2023). Influence of sense of competence, empathy and relationship quality on burden in dementia caregivers: A 15 months longitudinal study. Journal of Applied Gerontology, 42(3), 464–473. https://doi.org/10.1177/07334648221138545
   PubMed Web of Science ®Google Scholar
• Koch, J., Amos, J. G., Beattie, E., Lautenschlager, N. T., Doyle, C., Anstey, K. J., & Mortby, M. E. (2022). Non-pharmacological interventions for neuropsychiatric symptoms of dementia in residential aged care settings: An umbrella review. International Journal of Nursing Studies, 128, 104187. https://doi.org/10.1016/j.ijnurstu.2022.104187
   PubMed Web of Science ®Google Scholar
• Kok, G., Peters, L. W. H., & Ruiter, R. A. C. (2017). Planning theory- and evidence-based behavior change interventions: A conceptual review of the intervention mapping protocol. Psicologia: Reflexão e Crítica, 30(1), 19. https://doi.org/10.1186/s41155-017-0072-x
   Web of Science ®Google Scholar
• Laver, K., Milte, R., Dyer, S., & Crotty, M. (2017). A systematic review and meta-analysis comparing carer focused and dyadic multicomponent interventions for carers of people with dementia. Journal of Aging and Health, 29(8), 1308–1349. https://doi.org/10.1177/0898264316660414
   PubMed Web of Science ®Google Scholar
• Lavoie, P., Michaud, C., Bélisle, M., Boyer, L., Gosselin, É., Grondin, M., Larue, C., Lavoie, S., & Pepin, J. (2018). Learning theories and tools for the assessment of core nursing competencies in simulation: A theoretical review. Journal of Advanced Nursing, 74(2), 239–250. https://doi.org/10.1111/jan.13416
   PubMed Web of Science ®Google Scholar
• Leung, D. K. Y., Chan, W. C., Spector, A., & Wong, G. H. Y. (2021). Prevalence of depression, anxiety, and apathy symptoms across dementia stages: A systematic review and meta-analysis. International Journal of Geriatric Psychiatry, 36(9), 1330–1344. https://doi.org/10.1002/gps.5556
   PubMed Web of Science ®Google Scholar
• Linde, R. M., Matthews, F. E., Dening, T., & Brayne, C. (2017). Patterns and persistence of behavioural and psychological symptoms in those with cognitive impairment: The importance of apathy. International Journal of Geriatric Psychiatry, 32(3), 306–315. https://doi.org/10.1002/gps.4464
   PubMed Web of Science ®Google Scholar
• Lueken, U., Seidl, U., Volker, L., Schweiger, E., Kruse, A., & Schroder, 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
   PubMed Web of Science ®Google Scholar
• Lutomski, J. E., Baars, M. A., Schalk, B. W., Boter, H., Buurman, B. M., den Elzen, W. P., Jansen, A. P., Kempen, G. I., Steunenberg, B., Steyerberg, E. W., Olde Rikkert, M. G., & Melis, R. J; TOPICS-MDS Consortium. (2013). The development of the older persons and informal caregivers survey minimum DataSet (TOPICS-MDS): A large-scale data sharing initiative. PLoS One. 8(12), e81673. https://doi.org/10.1371/journal.pone.0081673
   PubMed Web of Science ®Google Scholar
• Miller, D. S., Robert, P., Ereshefsky, L., Adler, L., Bateman, D., Cummings, J., DeKosky, S. T., Fischer, C. E., Husain, M., Ismail, Z., Jaeger, J., Lerner, A. J., Li, A., Lyketsos, C. G., Manera, V., Mintzer, J., Moebius, H. J., Mortby, M., Meulien, D., … Lanctot, K. L. (2021). Diagnostic criteria for apathy in neurocognitive disorders. Alzheimers Dement, 17(12), 1892–1904. https://doi.org/10.1002/alz.12358
   Web of Science ®Google Scholar
• Milte, R., Shulver, W., Killington, M., Bradley, C., Ratcliffe, J., & Crotty, M. (2016). Quality in residential care from the perspective of people living with dementia: The importance of personhood. Archives of Gerontology and Geriatrics, 63, 9–17. https://doi.org/10.1016/j.archger.2015.11.007
   PubMed Web of Science ®Google Scholar
• Nijsten, J. M. H., Leontjevas, R., Pat-El, R., Smalbrugge, M., Koopmans, R., & Gerritsen, D. L. (2017). Apathy: Risk factor for mortality in nursing home patients. Journal of the American Geriatrics Society, 65(10), 2182–2189. https://doi.org/10.1111/jgs.15007
   PubMed Web of Science ®Google Scholar
• Nijsten, J. M. H., Leontjevas, R., Smalbrugge, M., Koopmans, R., & Gerritsen, D. L. (2019). Apathy and health-related quality of life in nursing home residents. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 28(3), 751–759. https://doi.org/10.1007/s11136-018-2041-y
   PubMed Web of Science ®Google Scholar
• Pagonabarraga, J., Kulisevsky, J., Strafella, A. P., & Krack, P. (2015). Apathy in Parkinson’s disease: Clinical features, neural substrates, diagnosis, and treatment. The Lancet Neurology, 14(5), 518–531. https://doi.org/10.1016/s1474-4422(15)00019-8
   PubMed Web of Science ®Google Scholar
• Reid, R. C., & Chappell, N. L. (2017). Family involvement in nursing homes: Are family caregivers getting what they want? Journal of Applied Gerontology: The Official Journal of the Southern Gerontological Society, 36(8), 993–1015. https://doi.org/10.1177/0733464815602109
   PubMed Web of Science ®Google Scholar
• 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
   PubMed Web of Science ®Google Scholar
• Ruthirakuhan, M. T., Herrmann, N., Abraham, E. H., Chan, S., & Lanctot, K. L. (2018). Pharmacological interventions for apathy in Alzheimer’s disease. The Cochrane Database of Systematic Reviews, 5(5), CD012197. https://doi.org/10.1002/14651858.CD012197.pub2
   PubMedGoogle Scholar
• Skivington, K., Matthews, L., Simpson, S. A., Craig, P., Baird, J., Blazeby, J. M., Boyd, K. A., Craig, N., French, D. P., McIntosh, E., Petticrew, M., Rycroft-Malone, J., White, M., & Moore, L. (2021). A new framework for developing and evaluating complex interventions: Update of medical research council guidance. BMJ (Clinical Research ed.), 374, n2061. https://doi.org/10.1136/bmj.n2061
   PubMed Web of Science ®Google Scholar
• Smaling, H. J. A., Francke, A. L., Achterberg, W. P., Joling, K. J., & van der Steen, J. T. (2023). The perceived impact of the namaste care family program on nursing home residents with dementia, staff, and family caregivers: A qualitative study. Journal of Palliative Care, 38(2), 143–151. https://doi.org/10.1177/08258597221129739
   PubMed Web of Science ®Google Scholar
• Tasseron-Dries, P. E. M., Smaling, H. J. A., Doncker, S., Achterberg, W. P., & van der Steen, J. T. (2021). Family involvement in the Namaste care family program for dementia: A qualitative study on experiences of family, nursing home staff, and volunteers. International Journal of Nursing Studies, 121, 103968. https://doi.org/10.1016/j.ijnurstu.2021.103968
   PubMed Web of Science ®Google Scholar
• Theleritis, C., Siarkos, K., Politis, A. A., Katirtzoglou, E., & Politis, A. (2018). A systematic review of non-pharmacological treatments for apathy in dementia. International Journal of Geriatric Psychiatry, 33(2), e177–e192. https://doi.org/10.1002/gps.4783
   PubMed Web of Science ®Google Scholar
• Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
   PubMed Web of Science ®Google Scholar
• Treusch, Y., Majic, T., Page, J., Gutzmann, H., Heinz, A., & Rapp, M. A. (2015). Apathy in nursing home residents with dementia: Results from a cluster-randomized controlled trial. European Psychiatry: The Journal of the Association of European Psychiatrists, 30(2), 251–257. https://doi.org/10.1016/j.eurpsy.2014.02.004
   PubMed Web of Science ®Google Scholar
• van Corven, C. T. M., Bielderman, A., Wijnen, M., Leontjevas, R., Lucassen, P., 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
   PubMed Web of Science ®Google Scholar
• van Corven, C., Bielderman, A., Wijnen, M., Leontjevas, R., Lucassen, P. L., Graff, M. J., & Gerritsen, D. L. (2022). Promoting empowerment for people living with dementia in nursing homes: Development and feasibility evaluation of an empowerment program. Dementia (London), 21(8), 2517–2535. https://doi.org/10.1177/14713012221124985
   PubMedGoogle Scholar
• van Dorst, M. E. G., Rensen, Y. C. M., Husain, M., & Kessels, R. P. C. (2021). Behavioral, emotional and social apathy in alcohol-related cognitive disorders. Journal of Clinical Medicine, 10(11), 2447. https://doi.org/10.3390/jcm10112447
   PubMed Web of Science ®Google Scholar
• Zhao, Q. F., Tan, L., Wang, H. F., Jiang, T., Tan, M. S., Tan, L., Xu, W., Li, J. Q., Wang, J., Lai, T. J., & Yu, J. T. (2016). The prevalence of neuropsychiatric symptoms in Alzheimer’s disease: Systematic review and meta-analysis. Journal of Affective Disorders, 190, 264–271. https://doi.org/10.1016/j.jad.2015.09.069
   PubMed Web of Science ®Google Scholar