1. Challenging behaviour in dementia Mike Bird DSDC Bangor University and Aged Care Evaluation Unit, Greater Southern Area Health, NSW, Australia

2. Behaviours on admission in frequency order Dangerous wandering13 Violent resistance to personal care12 Physical aggression not related to personal care10 Intrusive behaviour putting self or others at risk 8 Sexual disinhibition and assault 5 Destruction of property 4 Disturbed toilet habits/smearing etc. 3 Rapid mood swings 3 Night-time disturbance 2 Repetitive questions 2 Other dangerous behaviour 2 Agitating pacing/anxiety 2 Unjustified accusations 2 From Bird, Korten et al 2005. Evaluation of ADARDS Nursing home

3. Terminology Challenging behaviour versus Behavioural and Psychological Symptoms of Dementia (BPSD)

4. Treatment Most commonly anti-psychotics or other psychotropic agents despite two decades worth of meta-analyses concluding limited efficacy and frequent side effects There is no magic (psychotropic) bullet for BPSD (Sink et al., 2005) Psychosocial approaches should always be tried first?

5. Should psychosocial methods always be used first? Many situations, especially with pain or delirium related to infections, require medication first There are occasions when (antipsychotics) can be vital to maintaining people safely with good quality of life in care homes’. Bannerjee (2009)

6. What are psychosocial methods for challenging behaviour? Is it: Snoezelen, Aromatherapy, Hand massage, Music Therapy, Validation Therapy, Doll Therapy etc.? –Very poor evidence for their effectiveness Or is it, for example: The nurse assistant who, knowing that Miss Bagshaw normally thinks she is being sexually assaulted in the shower, is the only person able to accomplish intimate personal care with minimal distress?

7. Teddy, 62 years SDAT exacerbated by MVA MMSE 15 - Moderate impairment on CDR Nursing Home resident Referred for violent outbursts – mainly verbal but one serious physical GDS = 0 On anti-psychotic at baseline

8. Context Very depressed about ‘being in this prison’, and not being able to see his sons Extensive nursing home notes on night-time wakefulness, wishing he was dead, crying

9. Management Anti-depressants substituted for anti-psychotics Engaging volunteer to take Teddy jogging daily Engaging estranged wife to honour commitment to bring their young sons to visit Education for sons on dementia and what’s happening to Teddy (Eventually) ‘relocation therapy’ No further severe incidents; staff in new facility pre-empt problems

10. Teddy - problems Failure to look behind the behaviour to causes Magical beliefs in the power of a standardised assessment instrument at the expense of clinical observation Failure to consult with the staff who knew him best Addiction to a quick fix/magic bullet

11. Oliver 83 – aggression/resistance in personal care Moderate cognitive impairment but receptive aphasia Physically very slow and with severe arthritis Intervention Education on and training in: – resident’s past and difficulty adjusting to dependency – difficulty processing language – need for simple verbal directions – level of pain and discomfort and need to work at his pace Allowed to sleep through night despite urinary incontinence Aggressive pain management Training with lifting aids to help resident stand more readily Exercise programme to maintain/increase ambulation

12. Oliver 83: Frequency (per day) physical/verbal resistance to personal care Stress down Coping somewhat better Problem severity down

13. Laura 87: Hostel Resident Violent resistance in personal care Background Lifelong obsessive compulsive disorder Intervention Education on OCD and that change highly unlikely Collective decision on whether to transfer Laura Up-skilling and encouraging demoralised staff by two experienced RNs

14. Laura 87: Hostel Resident Violent resistance in personal care Background Lifelong obsessive compulsive disorder Intervention Education on OCD and that change highly unlikely Collective decision on whether to transfer Laura Up-skilling and encouraging demoralised staff by two experienced RNs

15. 0 10 20 30 40 50 60 70 80 90 100110 Minutes spent daily on personal care Days observed Pre-interventionTwo month monthfollow-up Five month follow-up 'LAURA' : Violent resistance in personal care Staff Stress NC NC CopingSeverity Total care time Unsuccessful care

16. Katerina 83 years, NH resident, vascular dementia, moderate impairment Problem: Everything Violent resistance in personal care Verbal aggression (sometimes physical) to other residents Fighting with family Sitting on the buzzer Continuous shouting Demanding to be attended to only by the current favourite

17. Katerina Causes pre-morbid character cultural expectations pain and general discomfort family reinforcement/exacerbation staff practices due to ‘duty of care’ beliefs depression?

18. Katerina 83 years, NH resident, vascular dementia, moderate impairment Interventions Alleviating staff anger + + + Consensus on limits Allowing K. to decide timing of personal care, and reward with massage afterwards Moving to single room Setting limits for family Anti-depressant

20. Discussion on cases

21. Discussion point A: Even if the behaviour appears the same, each case is different Cases vary across, at a minimum, these dimensions: The exact nature of the behaviour and its intensity, level of risk (even whether the behaviour exists as described) What’s causing it and in what context it occurs Who is distressed by it and who is distressed What you can actually do about it in this particular case – what constitutes a ‘success’.

22. Discussion: What causes staff distress?

23. Discussion point A: Even if the behaviour appears the same, each case is different Cases vary across, at a minimum, these dimensions: The exact nature of the behaviour and its intensity, level of risk (even whether the behaviour exists as described) What’s causing it and in what context it occurs Who is distressed by it and who is distressed What you can actually do about it in this particular case – what constitutes a ‘success’.

24. Point B. The nature of the behaviour doesn’t tell you what to do about it Accordingly: Standard approaches will only work a fraction of the time –e.g. atypical anti-psychotics, doll therapy, aroma therapy, analgesics, cholinesterase inhibitors, Snoezelen You need to go into each case with questions, not answers

25. Behaviours on admission in frequency order Dangerous wandering13 Violent resistance to personal care12 Physical aggression not related to personal care10 Intrusive behaviour putting self or others at risk 8 Sexual disinhibition and assault 5 Destruction of property 4 Disturbed toilet habits/smearing etc. 3 Rapid mood swings 3 Night-time disturbance 2 Repetitive questions 2 Other dangerous behaviour 2 Agitating pacing/anxiety 2 Unjustified accusations 2 From Bird, Korten et al 2005. Evaluation of ADARDS Nursing home

26. Point B. The nature of the behaviour doesn’t tell you what to do about it Accordingly: Standard approaches will only work a fraction of the time –e.g. atypical anti-psychotics, doll therapy, aroma therapy, analgesics, cholinesterase inhibitors, Snoezelen You need to go into each case with questions, not answers

27. Discussion Point C. Go in with questions rather than answers What exactly is the person doing that’s causing distress? What’s caused it to be a problem: –Is it a manifestation of distress by the person with dementia or is there a risk that it will lead to distressing consequences? –Is it causing significant distress to staff or others and if so, what is causing the distress? Assuming you have to address the behaviour, what is causing it? –What’s the context of the behaviour, when does it occur etc.? What can you do in this specific case at this time in this nursing home – which causes can you realistically address?

28. Common causes of challenging behaviour?

29. Common causes of disturbed behaviour Level and nature of cognitive impairment Physical or medical illness, including medication-induced problems Pain, significant discomfort Emotional/psychiatric disorders, espec. depression/anxiety History Physical environment Care environment/way care is carried out Daily activity of the resident

30. Common causes of disturbed behaviour Level and nature of cognitive impairment Physical or medical illness, including medication-induced problems Pain, significant discomfort Emotional/psychiatric disorders, espec. depression/anxiety History Physical environment Care environment/way care is carried out Daily activity of the resident

31. How do you find out what the causes of the behaviour are and why it’s a problem?

32. Causal factors: Information gathering Observation, recognising pain and delirium Perusing notes, talking to family, friends, GP etc. Talking to resident Context, looking for patterns: –When did it start –When does it occur, who with, where… –When, who with, where does it not occur Ask staff – they’re the experts

33. Point D. The purpose is not to ‘cure’ the behaviour. It is to reduce distress for the patient and others What can you do in this case at this nursing home? Addressing physical, medical and (sometimes) mental health causes mandatory –Often includes nursing/psychosocial interventions Addressing psychosocial causes may involve standard ‘therapies’ but: –It needs to be addressing the cause, not given just for the sake of it –Putting the information together and brain-storming common sense solutions is usually more helpful Addressing psychosocial issues includes why the behaviour is perceived as a problem –In 30-40 of cases you may not have to address the behaviour

34. Point D. The purpose is not to ‘cure’ the behaviour. It is to reduce distress for the patient and others What can you do in this case at this nursing home? Addressing physical, medical and (sometimes) mental health causes mandatory –Often includes nursing/psychosocial interventions Addressing psychosocial causes may involve standard ‘therapies’ but: –It needs to be addressing the cause, not given just for the sake of it –Putting the information together and brain-storming common sense solutions is usually more helpful Addressing psychosocial issues includes why the behaviour is perceived as a problem –In 30-40 of cases you may not have to address the behaviour

35. Point E. The nursing home as the patient? Residential care is a constantly evolving dynamic process (or system) between staff and resident, staff and staff, and staff and management –Nurses and patients with severe dementia share each other’s daily life existentially by being together, as well as practically by doing together” (Berg, Norberg et al., 1998) Most interventions have to be delivered into this system via the hands-on staff, who may have little training, and who almost always have low status and low pay –Accordingly, it is as important to establish rapport with key staff across the facility and to work closely with them to arrive at the final intervention plan - which they must see as their property and undertake - as in individual psychotherapy or CBT

36. Point E. The nursing home as the patient? Residential care is a constantly evolving dynamic process (or system) between staff and resident, staff and staff, and staff and management –Nurses and patients with severe dementia share each other’s daily life existentially by being together, as well as practically by doing together” (Berg, Norberg et al., 1998) Most interventions have to be delivered into this system via the hands-on staff, who may have little training, and who almost always have low status and low pay –Accordingly, it is as important to establish rapport with key staff across the facility and to work closely with them to arrive at the final intervention plan - which they must see as their property and undertake - as in individual psychotherapy or CBT

37. What can you do in this case at this nursing home? Sometimes very little You can reduce staff stress, resident behaviour, or both in a significant number of cases but not all Not every causal factor can be determined, or addressed, addressed and there are often restraints on what is possible Damage control

38. What can you do in this case at this nursing home? Sometimes very little You can reduce staff stress, resident behaviour, or both in a significant number of cases but not all Not every causal factor can be determined, or addressed, addressed and there are often restraints on what is possible Damage control

39. Conclusion Challenging behaviour in dementia is not a mystery. It is however complex and requires a compassionate understanding of dementia and of the difficulties carers face, an understanding of how residential care facilities work, multi-disciplinary detective work and formulation, clinical skills in engaging staff and helping them devise interventions, and… Humble clinicians

40. If you want any of: Copy of assessment instrument for staff Summary of the Lund study Copy of the Strains in Dementia Care Scale Copy of the journal article about the trial these cases were a part of Brief summary of what we did in the 44 cases that comprised the trial m.bird@bangor.ac.uk

41. http://www.ozshots.com/map/

42. http://www.gsahs.nsw.gov.au/page.asp?t=about&p=2

43. State and Federal developments SMHSOP initiative and funding –Service plan from 2005-2015 State BPSD review and funding –Development of BASIS service as part of SMHSOP plan Federal BPSD service and funding –DBMAS service set up across Australia CADE review (2006) and funding –They become medium stay (8-12 weeks)T-BASIS units Evaluation of T-BASIS units (2010-2011)

44. DBMAS Based on: Our controlled trial (Bird et al, 2007/2009) Similar services at Alzheimer’s Association South Australia, and another health area in NSW An evaluation of a telephone help line, mostly for home carers Uses good points from each, including our evidence. That is: Careful assessment Rolling education/capacity building as well as trouble shooting Training up a pool of care assistants to assist with cases A central pool of equipment Telephone help-line (based in SA)

45. F 1 F GOLDEN & WAGGA F F 1 F 2 4 F Weethalle F 4 F 2 1 F 1 SOUTHERN SLOPES & SOUTHERN TABLELANDS 1 9 2 4 4 2 F 1 ACT F 2 1 MONARO 2 2 1 F 4 2 2 F 4 EUROBODALLA & BEGA VALLEY 9 Wagga Griffith Albury DENILIQUIN CONARGO Coolamon Junee Berrigan Tocumwal Jerilderie Mathoura Gundagai The Rock Urana Queanbeyan Braidwood Tumut Adelong Tarcutta Tumbarumba Batlow Delegate Moama Ardlethan Temora Barellan Lockhart Tooleybuc Ungarie Leeton Cooma Batemans Bay Moruya Bombala Bega Pambula Eden Corowa Holbrook West Wyalong Hay Narooma Jindabyne Hillston Coleambally Darlington Point Narrandera Karabar Barham Yass 1 F F 2 MURRUMBIDGEE & LOWER WESTERN 1 F 1 1 1 4 4 2 F 1 2 2 F F GREATER ALBURY CLUSTER NAME Urban Locality Name Major towns/cities 050100 Kilometres 9 F 4 1 2 Base Hospital and Health Service District Hospital and Health Service Community Hospital and Health Service Multipurpose service Community Health Service Other 1 4 9 4 Finley Deniliquin Moulamein Crookwell Murrumburrah (Harden) Barmedman 9 Goulburn Gunning Boorowa 2 Cootamundra Culcairn Henty Young Mental Health Clusters