Symptoms and Treatment Needs of People with Dementia-Related Psychosis: A Mixed-Methods Study of the Patient Experience

References

• Aarsland, D., Larsen, J. P., Karlsen, K., Lim, N. G., & Tandberg, E. (1999). Mental symptoms in Parkinson’s disease are important contributors to caregiver distress. International Journal of Geriatric Psychiatry, 14(10), 866–874. doi:https://doi.org/10.1002/(SICI)1099-1166(199910)14:10<866::AID-GPS38>3.0.CO;2-Z
   PubMed Web of Science ®Google Scholar
• Aarsland, D., Perry, R., Larsen, J. P., McKeith, I. G., O’Brien, J. T., Perry, E. K., … Ballard, C. G. (2005). Neuroleptic sensitivity in Parkinson’s disease and parkinsonian dementias. The Journal of Clinical Psychiatry, 66(5), 633–637. doi:https://doi.org/10.4088/JCP.v66n0514
   PubMed Web of Science ®Google Scholar
• Aarsland, D., Taylor, J. P., & Weintraub, D. (2014). Psychiatric issues in cognitive impairment. Movement Disorders, 29(5), 651–662. doi:https://doi.org/10.1002/mds.25873
   PubMed Web of Science ®Google Scholar
• Ballard, C., Hanney, M. L., Theodoulou, M., Douglas, S., McShane, R., Kossakowski, K., … Investigators, D.-A. (2009). The dementia antipsychotic withdrawal trial (DART-AD): Long-term follow-up of a randomised placebo-controlled trial. The Lancet Neurology, 8(2), 151–157. doi:https://doi.org/10.1016/S1474-4422(08)70295-3
   PubMed Web of Science ®Google Scholar
• Ballard, C., & Howard, R. (2006). Neuroleptic drugs in dementia: Benefits and harm. Nature Reviews Neuroscience, 7(6), 492–500. doi:https://doi.org/10.1038/nrn1926
   PubMed Web of Science ®Google Scholar
• Ballard, C., Neill, D., O’Brien, J., McKeith, I. G., Ince, P., & Perry, R. (2000). Anxiety, depression and psychosis in vascular dementia: Prevalence and associations. Journal of Affective Disorders, 59(2), 97–106. doi:https://doi.org/10.1016/s0165-0327(99)00057-9
   PubMed Web of Science ®Google Scholar
• Brenowitz, W. D., Keene, C. D., Hawes, S. E., Hubbard, R. A., Longstreth, W. T., Jr., Woltjer, R. L., … Kukull, W. A. (2017). Alzheimer’s disease neuropathologic change, Lewy body disease, and vascular brain injury in clinic- and community-based samples. Neurobiology of Aging, 53, 83–92. doi:https://doi.org/10.1016/j.neurobiolaging.2017.01.017
   PubMedGoogle Scholar
• Chalasani, M., Vaidya, P., & Mullin, T. (2018). Enhancing the incorporation of the patient’s voice in drug development and evaluation. Research Involvement and Engagement, 4(1), 10. doi:https://doi.org/10.1186/s40900-018-0093-3
   PubMedGoogle Scholar
• Choi, A., Ballard, C., Martyr, A., Collins, R., Morris, R. G., Clare, L., & Team, I. P. (2021). The impact of auditory hallucinations on “living well” with dementia: Findings from the IDEAL programme. International Journal of Geriatric Psychiatry. doi:https://doi.org/10.1002/gps.5533
   Google Scholar
• Cummings, J., Ballard, C., Tariot, P., Owen, R., Foff, E., Youakim, J., … Stankovic, S. (2018). Pimavanserin: Potential treatment for dementia-related psychosis. The Journal of Prevention of Alzheimer’s Disease, 5(4), 253–258. doi:https://doi.org/10.14283/jpad.2018.29
   PubMed Web of Science ®Google Scholar
• Cummings, J., Pinto, L. C., Cruz, M., Fischer, C. E., Gerritsen, D. L., Grossberg, G. T., … Sano, M. (2020). Criteria for psychosis in major and mild neurocognitive disorders: International Psychogeriatric Association (IPA) consensus clinical and research definition. The American Journal of Geriatric Psychiatry, 28(12), 1256–1269. doi:https://doi.org/10.1016/j.jagp.2020.09.002
   PubMed Web of Science ®Google Scholar
• De Berardis, D., Rapini, G., Olivieri, L., Di Nicola, D., Tomasetti, C., Valchera, A., … Di Giannantonio, M.(2018). Safety of antipsychotics for the treatment of schizophrenia: A focus on the adverse effects of clozapine. Therapeutic Advances in Drug Safety, 9(5), 237–256. doi:https://doi.org/10.1177/2042098618756261
   PubMed Web of Science ®Google Scholar
• Elahi, F. M., & Miller, B. L. (2017). A clinicopathological approach to the diagnosis of dementia. Nature Reviews Neurology, 13(8), 457–476. doi:https://doi.org/10.1038/nrneurol.2017.96
   PubMed Web of Science ®Google Scholar
• Fischer, C. E., Ismail, Z., & Schweizer, T. A. (2012). Delusions increase functional impairment in Alzheimer’s disease. Dementia and Geriatric Cognitive Disorders, 33(6), 393–399. doi:https://doi.org/10.1159/000339954
   PubMed Web of Science ®Google Scholar
• Fischer, C. E., Ismail, Z., Youakim, J. M., Creese, B., Kumar, S., Nunez, N., … Ballard, C. (2020). Revisiting criteria for psychosis in Alzheimer’s disease and related dementias: Toward better phenotypic classification and biomarker research. Journal of Alzheimer’s Disease, 73(3), 1143–1156. doi:https://doi.org/10.3233/JAD-190828
   PubMed Web of Science ®Google Scholar
• Frazer, M., Abler, V., Halpern, R., Skoog, B., & Rashid, N. (2021). Burden of illness among patients with dementia-related psychosis. The Journal of Managed Care and Specialty Pharmacy, 27(3), 367–378. doi:https://doi.org/10.18553/jmcp.2021.27.3.367
   PubMedGoogle Scholar
• Friedman, E. M., Shih, R. A., Langa, K. M., & Hurd, M. D. (2015). US prevalence and predictors of informal caregiving for dementia. Health Affairs, 34(10), 1637–1641. doi:https://doi.org/10.1377/hlthaff.2015.0510
   PubMed Web of Science ®Google Scholar
• Hinkes, R., Quesada, T. V., Currier, M. B., & Gonzalez-Blanco, M. (1996). Aspiration pneumonia possibly secondary to clozapine-induced sialorrhea. Journal of Clinical Psychopharmacology, 16(6), 462–463. doi:https://doi.org/10.1097/00004714-199612000-00013
   PubMed Web of Science ®Google Scholar
• Jeste, D. V., & Finkel, S. I. (2000). Psychosis of Alzheimer’s disease and related dementias. Diagnostic criteria for a distinct syndrome. The American Journal of Geriatric Psychiatry, 8(1), 29–34. doi:https://doi.org/10.1097/00019442-200002000-00004
   PubMed Web of Science ®Google Scholar
• Johnson, D. K., Watts, A. S., Chapin, B. A., Anderson, R., & Burns, J. M. (2011). Neuropsychiatric profiles in dementia. Alzheimer Disease & Associated Disorders, 25(4), 326–332. doi:https://doi.org/10.1097/WAD.0b013e31820d89b6
   PubMed Web of Science ®Google Scholar
• Kales, H. C., Gitlin, L. N., & Lyketsos, C. G. (2015). Assessment and management of behavioral and psychological symptoms of dementia. Bmj, 350(mar02 7), h369. doi:https://doi.org/10.1136/bmj.h369
   PubMed Web of Science ®Google Scholar
• Kuehn, C. M. (2019). A proposed framework for patient-focused policy at the U.S. Food and drug administration. Biomedicines, 7(3), 3. doi:https://doi.org/10.3390/biomedicines7030064
   Google Scholar
• Kuschel, B. M., Laflamme, L., & Moller, J. (2015). The risk of fall injury in relation to commonly prescribed medications among older people–a Swedish case-control study. The European Journal of Public Health, 25(3), 527–532. doi:https://doi.org/10.1093/eurpub/cku120
   PubMedGoogle Scholar
• Lenzer, J. (2005). FDA warns about using antipsychotic drugs for dementia. Bmj, 330(7497), 7497. doi:https://doi.org/10.1136/bmj.330.7497.922-c
   Google Scholar
• Lyketsos, C. G., Lopez, O., Jones, B., Fitzpatrick, A. L., Breitner, J., & DeKosky, S. (2002). Prevalence of neuropsychiatric symptoms in dementia and mild cognitive impairment: Results from the cardiovascular health study. JAMA, 288(12), 1475–1483. doi:https://doi.org/10.1001/jama.288.12.1475
   PubMed Web of Science ®Google Scholar
• Mathis, M. V., Muoio, B. M., Andreason, P., Avila, A. M., Farchione, T., Atrakchi, A., & Temple, R. J. (2017). The US food and drug administration’s perspective on the new Antipsychotic Pimavanserin. The Journal of Clinical Psychiatry, 78(6), e668–e673. doi:https://doi.org/10.4088/JCP.16r11119
   PubMed Web of Science ®Google Scholar
• McKeith, I., Fairbairn, A., Perry, R., Thompson, P., & Perry, E. (1992). Neuroleptic sensitivity in patients with senile dementia of Lewy body type. Bmj, 305(6855), 673–678. doi:https://doi.org/10.1136/bmj.305.6855.673
   PubMed Web of Science ®Google Scholar
• McKeith, I. G., Boeve, B. F., Dickson, D. W., Halliday, G., Taylor, J. P., Weintraub, D., … Kosaka, K. (2017). Diagnosis and management of dementia with Lewy bodies: Fourth consensus report of the DLB Consortium. Neurology, 89(1), 88–100. doi:https://doi.org/10.1212/WNL.0000000000004058
   PubMed Web of Science ®Google Scholar
• McKhann, G. M., Knopman, D. S., Chertkow, H., Hyman, B. T., Jack, C. R., Jr., Kawas, C. H., … Phelps, C. H. (2011). The diagnosis of dementia due to Alzheimer’s disease: Recommendations from the National Institute on Aging-Alzheimer’s association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s & Dementia, 7(3), 263–269. doi:https://doi.org/10.1016/j.jalz.2011.03.005
   PubMed Web of Science ®Google Scholar
• Mendez, M. F., Shapira, J. S., Woods, R. J., Licht, E. A., & Saul, R. E. (2008). Psychotic symptoms in frontotemporal dementia: Prevalence and review. Dementia and Geriatric Cognitive Disorders, 25(3), 206–211. doi:https://doi.org/10.1159/000113418
   PubMed Web of Science ®Google Scholar
• Mourik, J. C., Rosso, S. M., Niermeijer, M. F., Duivenvoorden, H. J., Van Swieten, J. C., & Tibben, A. (2004). Frontotemporal dementia: Behavioral symptoms and caregiver distress. Dementia and Geriatric Cognitive Disorders, 18(34), 299–306. doi:https://doi.org/10.1159/000080123
   PubMedGoogle Scholar
• Mullin, T., Vaidya, P., & Chalasani, M. (2019). Recent US food and drug administration efforts to integrate the patient’s perspective in drug development and decision making. Clinical Pharmacology & Therapeutics, 105(4), 789–791. doi:https://doi.org/10.1002/cpt.1290
   PubMedGoogle Scholar
• Peters, M. E., Schwartz, S., Han, D., Rabins, P. V., Steinberg, M., Tschanz, J. T., & Lyketsos, C. G. (2015). Neuropsychiatric symptoms as predictors of progression to severe Alzheimer’s dementia and death: The cache county dementia progression study. American Journal of Psychiatry, 172(5), 460–465. doi:https://doi.org/10.1176/appi.ajp.2014.14040480
   PubMed Web of Science ®Google Scholar
• Ravina, B., Marder, K., Fernandez, H. H., Friedman, J. H., McDonald, W., Murphy, D., … Goetz, C. (2007). Diagnostic criteria for psychosis in Parkinson’s disease: Report of an NINDS, NIMH work group. Movement Disorders, 22(8), 1061–1068. doi:https://doi.org/10.1002/mds.21382
   PubMed Web of Science ®Google Scholar
• Reus, V. I., Fochtmann, L. J., Eyler, A. E., Hilty, D. M., Horvitz-Lennon, M., Jibson, M. D., … Yager, J. (2016). The American psychiatric association practice guideline on the use of Antipsychotics to Treat Agitation or Psychosis in patients with dementia. American Journal of Psychiatry, 173(5), 543–546. doi:https://doi.org/10.1176/appi.ajp.2015.173501
   PubMed Web of Science ®Google Scholar
• Reynolds, G. P. (2011). Receptor mechanisms of antipsychotic drug action in bipolar disorder - focus on asenapine. Therapeutic Advances in Psychopharmacology, 1(6), 197–204. doi:https://doi.org/10.1177/2045125311430112
   PubMedGoogle Scholar
• Saenger, R. C., Finch, T. H., & Francois, D. (2016). Aspiration Pneumonia Due to Clozapine-Induced Sialorrhea. Clinical Schizophrenia & Related Psychoses, 9(4), 170–172. doi:https://doi.org/10.3371/CSRP.SAFI.061213
   PubMedGoogle Scholar
• Scarmeas, N., Brandt, J., Albert, M., Hadjigeorgiou, G., Papadimitriou, A., Dubois, B., … Stern, Y. (2005). Delusions and hallucinations are associated with worse outcome in Alzheimer disease. Archives of Neurology, 62(10), 1601–1608. doi:https://doi.org/10.1001/archneur.62.10.1601
   PubMedGoogle Scholar
• Schneider, J. A., Arvanitakis, Z., Bang, W., & Bennett, D. A. (2007). Mixed brain pathologies account for most dementia cases in community-dwelling older persons. Neurology, 69(24), 2197–2204. doi:https://doi.org/10.1212/01.wnl.0000271090.28148.24
   PubMed Web of Science ®Google Scholar
• Schneider, L. S., Dagerman, K. S., & Insel, P. (2005). Risk of death with atypical antipsychotic drug treatment for dementia: Meta-analysis of randomized placebo-controlled trials. JAMA, 294(15), 1934–1943. doi:https://doi.org/10.1001/jama.294.15.1934
   PubMed Web of Science ®Google Scholar
• Schneider, L. S., Tariot, P. N., Dagerman, K. S., Davis, S. M., Hsiao, J. K., Ismail, M. S., … Lieberman, J. A. (2006). Effectiveness of atypical antipsychotic drugs in patients with Alzheimer’s disease. New England Journal of Medicine, 355(15), 1525–1538. doi:https://doi.org/10.1056/NEJMoa061240
   PubMed Web of Science ®Google Scholar
• Shim, A., Andes, S., Rashid, N., & Citrome, L. (2019, May 1822). Burden of disease associated with dementia-related psychosis using a national long-term care US database. New Orleans, LA: International Society for Pharmacoeconomics and Outcomes Research.
   Google Scholar
• Spindler, M. A., Galifianakis, N. B., Wilkinson, J. R., & Duda, J. E. (2013). Globus pallidus interna deep brain stimulation for tardive dyskinesia: Case report and review of the literature. Parkinsonism & Related Disorders, 19(2), 141–147. doi:https://doi.org/10.1016/j.parkreldis.2012.09.016
   PubMed Web of Science ®Google Scholar
• Steinberg, M., Shao, H., Zandi, P., Lyketsos, C. G., Welsh-Bohmer, K. A., Norton, M. C., … Tschanz, J. T. (2008). Point and 5-year period prevalence of neuropsychiatric symptoms in dementia: The cache county study. International Journal of Geriatric Psychiatry, 23(2), 170–177. doi:https://doi.org/10.1002/gps.1858
   PubMed Web of Science ®Google Scholar
• Trigoboff, E., Grace, J., Szymanski, H., Bhullar, J., Lee, C., & Watson, T. (2013). Sialorrhea and aspiration pneumonia: A case study. Innovations in Clinical Neuroscience, 10(56), 20–27. https://www.ncbi.nlm.nih.gov/pubmed/23882437
   PubMedGoogle Scholar
• United States Federal Government. (2021). “Electronic code of federal regulations.” Retrieved May 7, 2021, from https://www.ecfr.gov/cgi-bin/text-idx?SID=300df04ebff09c7b23735d902a3f645a&mc=true&tpl=/ecfrbrowse/Title45/45cfr46_main_02.tpl.
   Google Scholar
• Vilalta-Franch, J., Lopez-Pousa, S., Calvo-Perxas, L., & Garre-Olmo, J. (2013). Psychosis of Alzheimer disease: Prevalence, incidence, persistence, risk factors, and mortality. The American Journal of Geriatric Psychiatry, 21(11), 1135–1143. doi:https://doi.org/10.1016/j.jagp.2013.01.051
   PubMedGoogle Scholar
• Weintraub, D., Chiang, C., Kim, H. M., Wilkinson, J., Marras, C., Stanislawski, B., … Kales, H. C. (2016). Association of Antipsychotic use with mortality risk in patients with Parkinson disease. JAMA Neurology, 73(5), 535–541. doi:https://doi.org/10.1001/jamaneurol.2016.0031
   PubMed Web of Science ®Google Scholar
• Wetmore, J. B., Peng, Y., Yan, H., Li, S., Irfan, M., Shim, A., … Gilbertson, D. T. (2021). Association of dementia-related psychosis with long-term care use and death. Neurology, 96(12), e1620–e1631. doi:https://doi.org/10.1212/WNL.0000000000011632
   PubMed Web of Science ®Google Scholar
• Zahodne, L. B., Ornstein, K., Cosentino, S., Devanand, D. P., & Stern, Y. (2015). Longitudinal relationships between Alzheimer disease progression and psychosis, depressed mood, and agitation/aggression. The American Journal of Geriatric Psychiatry, 23(2), 130–140. doi:https://doi.org/10.1016/j.jagp.2013.03.014
   PubMed Web of Science ®Google Scholar