Extreme neuropsychiatric symptoms (NPS) can be a heavy burden for nursing home (NH)-residents, relatives and caregivers. When conventional treatments are ineffective or have intolerable side effects, extreme NPS can be considered refractory. In these situations, continuous palliative sedation (CPS) is sometimes administered. We explored the trajectory leading to CPS and its application in NH-residents with dementia and refractory NPS.

A qualitative interview study was performed in 2017. Relatives, elderly care physicians and other staff members involved with three NH-residents with dementia and extreme refractory NPS who received CPS were interviewed. These NH-residents lived on dementia special care units of three NHs in the Netherlands. We used consecutive sampling to select participants. Medical files were studied. Semi-structured interviews were conducted. Transcriptions were analyzed with thematic analysis, including directed content analysis.

Nine in-depth interviews with fourteen participants were held. Analysis resulted in five main themes with several subthemes reflecting phases of the trajectory leading to CPS and the CPS application itself, a sixth main theme concerned evaluations thereof. According to the first theme (run-up), the suffering of the NH-resident was described as unbearable/an inner struggle. Participants still had hope for improvement. Concerning the second theme (turning point), hope was lost, participants were convinced they had tried everything and experienced feelings of powerlessness and failure. Regarding theme three (considering CPS), intermittent sedation was applied in all three cases and peer consultation was employed. Honoring the wish of the NH-resident and therapeutic uncertainties, among others, were important subthemes. According to theme four (decision to start CPS), in each case one specific aspect was a decisive trigger for administering CPS. Concerning theme five (applying CPS) feelings of relief were experienced after starting with CPS.

The trajectory leading up to CPS in NH-residents with dementia and extreme refractory NPS was complex and burdensome, but the application led to relief and contentment of all those involved. We recommend to include external consultation in the decision process and to apply intermittent sedation as a preceding step when CPS is considered.

Fifty to ninety percent of individuals with Major Neurocognitive Disorder (MNCD) have Neuropsychiatric Symptoms (NPS)1. Agitation and aggression are amongst the most persistent and treatment-refractory symptom clusters. Patients with these NPS are associated with increased risk of institutionalization, psychotropic medication use, caregiver burden, and mortality2.

Safe and effective treatments for NPS are lacking. Consensus guidelines emphasize the initial use of non-pharmacologic approaches though supportive evidence is limited3.

Extensive research has established the safety and efficacy of ECT in elderly patients with depression and other psychiatric conditions6. Clinical experience suggests that ECT is a valuable treatment option in MNCD-related treatment refractory NPS cases7-10. However, data supporting the efficacy and safety of this practice is scant.

Patients admitted to the geriatric psychiatry inpatient units who meet the inclusion criteria, were recruited from 2 Vancouver sites and 3 unit at Ontario Shores. These patients had an anesthesia consultation to evaluate their safety of going through ECT. Consent was obtained from their substitute decision makers. All patients enrolled are already on psychotropic medications.

Behavioral and psychological symptoms in dementia (BPSD) have great impact on the daily lives of Alzheimer’s disease (AD) patients and their caregivers. Timely recognition and treatment of these symptoms may benefit quality of life, caregiver burden, and delay disease progression. In this qualitative study we examine the experiences of memory clinic physicians with the recognition and management of BPSD in early stages of AD.

Semi-structured interviews were held with 8 physicians (5 neurologists, 3 geriatricians) employed at memory clinics of academic or general hospitals in the Netherlands. Two independent researchers coded verbatim transcripts of the interviews, followed by a consensus meeting on preliminary themes. In the upcoming months, additional interviews will be conducted until data saturation is reached.

Preliminary results indicate substantial variability in how memory clinic physicians recognize and diagnose BPSD in AD. Themes are: 1. Prevalence of BPSD in early stages of AD; e.g. ‘BPSD is more often present in late stages of AD […]’ vs. ‘I see this often, very often, I think these are the main problems people with AD face’). 2. Systematic assessment; some physicians consider it part of their clinical work-up to assess behavioral changes while other physicians do not touch upon BPSD. 3. Barriers for assessment; e.g. a lack of time, and not being able to observe BPSD occurring at home in a memory clinic setting. Treatment and management of BPSD in AD also differed greatly. Themes are 1. Treatment type; Two physicians discussed using a person-centered non-pharmacological approach, others refer patients with BPSD to daycare, a case manager or psychiatrist, or treat ‘problematic’ behaviors with psychotropic drugs. 2. Capabilities; some physicians experience managing BPSD in AD as very difficult, while others are confident about their capabilities. The majority suggests that collaboration with GPs or case managers may benefit treating these complex symptoms.

There are remarkable differences in the recognition and management of BPSD in patients with AD visiting memory clinics in the Netherlands. Considering the potential benefit of early recognition and treatment, a first crucial step is discussing standardization of recognition and management of BPSD in memory clinics.

Behavioral and psychological symptoms of dementia (BPSD) are very prevalent among individuals with dementia living in residential aged care. The development and implementation of new non-pharmacological interventions to reduce BPSD requires knowledge on the current perception and clinical practice of the care staff. We analyzed clinical care notes to examine the way residential aged care staff reported and managed BPSD in their daily clinical practice.

We examined semi-structured care notes relating to the presentation and management of behaviors of 76 older residents (67% female; aged 67-101; 75% with formal dementia diagnosis) prior to participating in the Australian BPSDPLUS Program. As part of standard clinical practice in three residential aged care facilities, staff document the presentation and management of behaviors amongst residents. Using an inductive thematic analytical approach, we analyzed the reported data in the one and a half months prior to commencing participation in the BPSDPLUS Program. Care notes were coded and analyzed by two independent assessors and they discussed themes until consensus was reached.

A total of 465 behavior charts were completed in the one and a half months prior to the commencement of the BPSDPLUS Program. The number of behavioral charts varied widely across residents (Mean=7.3, range 0–93). Behaviors such as refusal of care, repetitive verbal behaviors, and wandering were most often mentioned, while apathy and affective and psychotic symptoms were seldomly reported. When confronted with BPSD, the clinical care notes indicated that care staff tend to respond in a reactive manner by reassuring, redirecting, or distracting the resident. Furthermore, it seems that staff did not routinely investigate potential underlying causes of the BPSD.

These results suggest that the residential care staff primarily detected and responded to externalizing behaviors, while more internalizing behaviors were not reported. Potential underrecognition of internalizing behaviors, as well as the fact that the staff did not routinely examine causes of BPSD are vital observations for the development and implementation of nonpharmacological interventions and care programs targeting BPSD in residential aged care.