Targeting specialist challenging behaviour interventions in aged care homes: can severe challenging behaviours be identi

1. Targeting specialist challenging behaviourinterventions in aged care homes: can severe challenging behaviours be identified? Dr Graham Stokes Divisional Director of Dementia Care Bupa

2. Terminology influences perception and intervention • Challenging Behaviour (CB) or behaviours that challenge others • Behavioural and Psychological Symptoms of Dementia (BPSD) • Neuropsychiatric Symptoms of Dementia • Non-cognitive Symptoms of Dementia

3. Models of Understanding • Behaviours that Challenge – Psychosocial modelling - Interpreted as an interaction between need, behaviour and the way actions of PwD are experienced by others. • BPSD – Disease modelling – Interpreted as signs/symptoms of neuropathology and a marker of disease progression.

4. Diagnostic over-shadowing • All that is observed after diagnosis is attributed to the diagnosis BUT • PwD with shared diagnosis reveal inter-individual behavioural and emotional differences that are not accounted for by severity and localisation of lesions • Intra-individual differences – ‘catastrophic decline and ‘rementia’ in response to environmental provocations and specific setting events. • Differences that are difficult for a disease-model to accommodate • A complex interplay of biological, neurological, psychological and social factors (Stokes, 1996; Bird & Moniz-Cook, 2008)

5. Nature of behaviour defined as challenging • Mild severity – acts of omission, e.g. apathy, absence of behaviour • Escalating severity – acts of commission, e.g. agitation, aggression, smearing, shouting, confusion

6. Consequences for supporters and carers • Families and professional caregivers unable to cope (this is the essence of what constitutes ‘challenge’) • Referral to community mental health teams • Request for respite care • Breakdown of care at home • An increased risk of hospitalisation • Treatment with antipsychotic medication • Entry to a care home

7. Challenging behaviour and care homes • Over 80% of PwD admitted to nursing homes can have at least two or more CBs • At 6-month follow-up at least one clinically significant CB persisted in 80.4% of residents (Ryu et al., 2005) • CB rates of 76% - 82% (Ballard et al., 2001), 80.5% (Selback et al, 2007) and 91.7% (Bergh et al., 2011) have been reported.

8. Hierarchical structure of Challenging Behaviour in residents living in aged care homes: implications for specialist interventions I. James, R. Watson, K. Swift, C.J. Whitaker, G. Stokes, C. Hart, E. Moniz-Cook • An NIHR funded cluster randomised controlled trial of individually tailored psychological intervention for the management of CB in dementia is currently underway in England (www.challengedemcare.com). • A survey of CB in 2185 residents was conducted with care staff in 63 residential and nursing homes for older people • 25-item Challenging Behaviour Scale (Moniz-Cook et al., 2001)

9. Statistical Analysis A combined approach using Mokken scaling and hierarchical clustering was used to explore whether a hierarchical pattern existed within the incidence of challenging behaviour.

10. Headline results • Prevalence of challenging behaviour (CB) was high with 87.5% percent of residents exhibiting one or more CB • 274 residents (12.5%) had a score of zero on the CBS • Three CB groupings were identified - Apathy (Cluster 1) - Agitation/Aggression (Cluster 2) - Social Disinhibition (Cluster 3) • The most frequent behaviours were ‘acts of omission’ relating to the theme of ‘Apathy’ (Cluster 1).

11. A Pattern Emerges • A five-level hierarchy emerged revealing a relationship between 18 Challenging Behaviour Scale (CBS) items • 7 CBS items did not fit the pattern and dropped out of the hierarchy. • These 7 may have multifactoral explanations and consequently may be weakly associated with dementia (e.g. manipulation, pilfering, sleep disturbance, smearing) • Behaviours at the top of the hierarchy tended to occur in the presence of those lower down. • Extreme Cluster 3 behaviours (spitting, dangerous behaviour, stripping) are less frequently observed than CB items at the bottom of the hierarchy (e.g. lack of self care, verbal aggression).

12. Hierarchical Scaling of Challenging Behaviours

13. Conclusion In a large sample of care home residents 57% (1,242) of residents with CBs followed the Mokken pattern thereby demonstrating a five level hierarchy of challenging behaviours of increasing severity

14. Explanation: Mutually-inclusive hypotheses • Cognitive decline / deficit hypothesis – hierarchy of CBs associated with severity of cognitive decline and may be related to increasing deficits within the central executive area (dysexecutive syndromes) • Psychotropic hypothesis - tranquilising and sedating effects of psychotropic medicines contribute to difficulties for PwD in thinking, reduced self care competence and non-compliance or resistance to help with personal care, as well as the iatrogenic effects of restlessness and dyskinesia • Unmet need hypothesis - expression of unmet need in response to poor quality care. Caregivers may cope poorly with CBs and react with confrontation, blaming and avoidance that constitutes a spiral of psychosocial decline resulting in more extreme CBs. • Environmental vulnerability’ hypothesis - decreasing coping abilities of PwD over the course of their illness to manage living in 24-hour ‘close’ care precipitates stress which in turn leads to CBs. In this hypothesis a number of tipping points may be reached, whereby there is a qualitative change in coping style and presentation of distress that maps onto the hierarchical themes observed.

15. Implications for interventions • The hypotheses suggest that care staff should not merely expect higher incidences of CBs, rather they might expect the occurrence of specific types of behaviours and potentially ‘clusters’ of behaviours occurring simultaneously. • Implications for training, staffing levels, assessment procedures, care planning and living environment design. • Targeted stepped-care interventions may assist care home staff gain confidence in non-pharmacological interventions as alternatives to the use of prescribed antipsychotics to manage CBs. • Cluster 1 CBs - quality of life audits and Dementia Care Mapping (University of Bradford Dementia Group) • Complex Cluster 3 CBs - assistance of specialist out-reach CB teams employing case-specific functional analysis-based interventions (Cochrane Review, Moniz-Cook et al. 2012)

16. Next steps • Analysis of large data sets derived from other measures that have been used with care home residents living with dementia (i.e. Cohen Mansfield Agitation Inventory; Neuropsychiatric Inventory-Nursing Home version) using the same Mokken scaling and hierarchical clustering we employed would demonstrate the validity of our findings. • This might also provide further insight into why some items did not hold to the hierarchical model that emerged from our study. • Research is required to validate a stepped-care decision making process to CB interventions.

17. Thank you