Abstract
Objectives Behavioural and psychological symptoms of dementia (BPSD) cause significant distress to both aged care residents and staff. Despite the high prevalence of BPSD in progressive neurological diseases (PNDs) such as multiple sclerosis, Huntington's disease, and Parkinson's disease, the utility of a structured clinical protocol for reducing BPSD has not been systematically evaluated in PND populations. Method Staff (n = 51) and individuals with a diagnosis of PND (n = 13) were recruited into the study, which aimed to evaluate the efficacy of a PND-specific structured clinical protocol for reducing the impact of BPSD in residential aged care (RAC) and specialist disability accommodation (SDA) facilities. Staff were trained in the clinical protocol through face-to-face workshops, which were followed by 9 weeks of intensive clinical supervision to a subset of staff (“behaviour champions”). Staff and resident outcome measures were administered preintervention and immediately following the intervention. The primary outcome was frequency and severity of BPSD, measured using the Neuropsychiatric Inventory-Nursing Home Version (NPI-NH). The secondary outcome was staff coping assessed using the Strain in Dementia Care Scale (SDCS). Results In SDA, significant reductions in staff ratings of job-related stress were observed alongside a statistically significant decrease in BPSD from T1 to T2. In RAC, there was no significant time effect for BPSD or staff coping; however, a medium effect size was observed for staff job stress. Conclusions Staff training and clinical support in the use of a structured clinical protocol for managing BPSD were linked to reductions in staff job stress, which may in turn increase staff capacity to identify indicators of resident distress and respond accordingly. Site variation in outcomes may relate to organisational and workforce-level barriers that may be unique to the RAC context and should be systematically addressed in future RCT studies of larger PND samples.
Highlights
Behavioural and psychological symptoms of dementia (BPSD) represent a significant challenge in the clinical care and management of individuals living with progressive neurological diseases (PNDs)
Univariate analyses revealed that the residential aged care (RAC) and specialist disability accommodation (SDA) did not significantly differ on baseline total Neuropsychiatric InventoryNursing Home Version (NPI-NH) scores (t 1, 11 = 1 07, p = 0 307), such that residents at each facility had comparable levels of BPSD at baseline
Since existing research in this area has been limited only to a single randomized controlled trial (RCT) of a structured clinical protocol for BPSD in individuals with older-onset dementia of the Alzheimer’s type [22], our findings extend on this earlier work to suggest that this intervention model may be an acceptable and efficacious approach to management of BPSD associated with young-onset PNDs, at least in the SDA setting
Summary
Behavioural and psychological symptoms of dementia (BPSD) represent a significant challenge in the clinical care and management of individuals living with progressive neurological diseases (PNDs). A further significant proportion of people are affected by Huntington’s disease (6–14 per 100,000) and motor neurone disease (4–8 per 100,000) [1]. These conditions generally affect individuals from early to late midlife and are associated with complex patterns of physical, cognitive, and behavioural impairment [2]. Though the nature and correlates of BPSD in PNDs are not well characterised, challenging behaviours such as aggression, irritability, shouting, repetitive questions, and sexual disinhibition are common and may underlie high rates of carer distress and burnout in these populations [3]. BPSD represent one of several factors that prompt a decision to move individuals with PNDs into residential facilities, where prevalence of BPSD is high [4, 5]
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