It is fitting that the recent consensus-based algorithm for managing agitation in persons living with neurocognitive disorders is captured by the acronym “IPA” (i.e. Investigate, Plan and Act) (Cummings et al., Reference Cummingsthis issue). IPA, also an acronym for the International Psychogeriatric Association, and by association with our journal, International Psychogeriatrics, has been in the business of developing consensus-based solutions and science for the management of agitation in people living with dementia for over 25 years (Finkel et al., Reference Finkel, Costa e Silva, Cohen, Miller and Sartorius1996). Yet, as noted by Cummings et al. (Reference Cummingsthis issue), over 25 years later there remains a paucity of treatment studies for agitation including few studies of comparative efficacy, sequential application, or concomitant use of multiple treatment modalities. As such, the algorithm is informed by an integration of the literature with expert opinion and best practice.

One of the reasons for the dearth of evidence has been the rather blurred and ambiguous meaning of the word agitation, in particular distinguishing how it differs from the broader concept of changed behaviors, formerly behavioral and psychological symptoms of dementia (BPSD). In order to remedy this confusion, the IPA Agitation workshop used the IPA consensus clinical and research definition of agitation (Cummings et al., Reference Cummings2015; Sano, Reference Sano2022) as a frame for the algorithm (Cummings et al., Reference Cummingsthis issue). Agitation was thus defined as (1) occurring in patients with a cognitive impairment or dementia syndrome; (2) exhibiting behavior consistent with emotional distress; (3) manifesting excessive motor activity, verbal aggression, or physical aggression; and (4) evidencing behaviors that cause excess disability, not solely attributable to another disorder (psychiatric, medical, or substance-related) (Sano, Reference Sano2022). This definition clearly distinguishes agitation as a hyperactive motor activity and aggression subsyndrome of the broader changed behaviors syndrome.

As Salzman (Reference Salzman2022) has aptly noted, treating agitation is difficult and not cheap, noting: “anyone who has ever tried to treat an elderly patient with severe agitation can understand the need for better treatments”(p 865). In fact, finding both effective and cost-effective pharmacotherapy for treating agitation when non-pharmacological strategies haven't worked remains an aspiration (Henderson et al., Reference Henderson2022). This is equally true for non-pharmacological strategies. Hence, reaching a consensus about the most appropriate management of agitation is absolutely crucial to achieve consistency in quality care across treatment settings.

It is not surprising, therefore, that in 2023 clinicians still welcome these algorithms (Jeste, Reference Jeste2022), the efficacy of which has been established in a small pilot study focusing on outcomes such as earlier discharge from hospital, reduced psychotropic polypharmacy and falls (Kumar et al., Reference Kumar2022). Importantly, Cummings et al. (Reference Cummingsthis issue) have recognized the importance of tailoring the intervention to the setting, whether it be the person’s home, residential care, the emergency department, or hospice setting. Moreover, akin to Brodaty et al’s (Reference Brodaty, Draper and Low2003) tiered model of care, the algorithm is tailored to the severity of agitation, recognizing the obvious differences between treating mild agitation, and treating extreme agitation that poses danger to the person or others.

Additionally, based on quality prescribing principles (Peisah et al., Reference Peisah, Strukovski, Wijeratne, Mullholland, Luscombe and Brodaty2015), the notion of review is embedded within the model, with assessment cycles and evaluation of the success of each planned action. This is embodied within the model: “Investigate, Plan and Act” then Repeat, rather than simply “Set and Forget.”

Shared decision-making (SDM) is also central to the IPA agitation algorithm, consistent with contemporary, human rights-driven approaches to the management of dementia, underpinned by rights to autonomy, dignity, and support for decision-making (Peisah et al., Reference Peisah, Sorinmadeayo, Mitchell and Hertogh2013; Peisah et al., Reference Peisah, de Mendonça Lima, Verbeek and Rabheru2022). The rights of older people to make choices about the care they receive are embodied in human rights frameworks and in various charters of rights for older people, both in Australia (Australian Government, 2022) and internationally (Age Platform Europe, 2022). Older people want these choices. For example, an Australian qualitative study of 31 long-term residents emphasized the importance of residents being given the choice to take part in SDM in medication management, to have beliefs and values regarding SDM understood, and to ensure that the culture of the care facility respects these rights (Sawan et al., Reference Sawan, Jeon, Hilmer and Chen2022).

Yet, despite strong evidence that residents, relatives, and designated decision-makers wish to be, and must be involved by law, when decisions around medications are made, there is compelling evidence that this does not happen and has not been happening for some time. For example, a file audit of 77 nursing home residents living with dementia, on psychotropic medication, and lacking capacity to give consent, found that all regulations with respect to substitute consent were adhered to in only 6.5% of cases and attempted and partially completed in a further 6.5% (Rendina et al., Reference Rendina, Brodaty, Draper, Peisah and Brugue2009). Similarly, some ten years later, in the "HALT" study, an Australian deprescribing intervention conducted in 28 residential aged care homes, less than 15% of residents had any evidence of a consent process for the use of antipsychotic treatment documented in their medical notes (Harrison et al., Reference Harrison2020). Likewise, a recent systematic review which examined how residents and families engage in the management of residents’ medications in aged care facilities found that they were rarely involved when prescribing decisions were made. Communication was typically unidirectional and involved transference of medical information, as opposed to active collaboration with recognition that consent was legally required before medication was prescribed (Manias et al., Reference Manias, Bucknall, Hutchinson, Dow and Borrott2021).

It must be emphasized here that Australia’s “problem with consent” for psychotropics (Peisah and Jessop, Reference Peisah and Jessop2021) extends beyond its borders internationally. We can all do better, not just with regard to consent, but holistically in the person-centered care of persons living with neurocognitive disorders and agitation. It has been suggested that variation in health care, including medication usage, albeit a troubling feature of contemporary medicine internationally, can provide impetus for action and change (Duggan et al., Reference Duggan, Koff and Marshall2016). The clinical setting of managing agitation in neurocognitive disorders is the perfect example of how acknowledging care variation can be an impetus to define and promote appropriate care. In this complex clinical context, with a sparse evidence base to guide us, we need mechanisms to define and communicate “what is right” to improve patient outcomes. A consensus-based definition of agitation in neurocognitive disorders (Sano, Reference Sano2022) with a consensus-based tool for management of agitation (Cummings et al., Reference Cummingsthis issue) may provide such mechanisms.