Intervening in Behaviour that Challenges in Dementia Care. Professor Esme Moniz-Cook Faculty of Health Sciences

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1 Intervening in Behaviour that Challenges in Dementia Care Professor Esme Moniz-Cook Faculty of Health Sciences 17 th May 2018

2 British Psychological Society: Evidence Briefing uk/news-andpolicy/psychologicaldimensions-dementia

3 Behaviour that Challenges [BtC] - Definition

4 Key Messages

5 Calls to Action

6 Challenge Demcare: Management of challenging behaviour at home and in care homes

7 The complex paradigm of dementia-related symptoms that can cause distress BPSD Neuropsychiatric/ non-cognitive symptoms Challenging Behaviour Behaviour(s) that Challenge(s) BtC

8 Models of Understanding Challenging Behaviour/BtC - Psychosocial modelling: Interpreted as an interaction between need, behaviour and the way actions of PwD are experienced by others BPSD /NPS /Non Cognitive symptoms - Disease modelling : Interpreted as signs/symptoms of neuropathology and a marker of disease progression Stress and Distress - an emerging new descriptor?

9 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 social and contextual factors

10 NICE Guidance Consultation 2018

11 Applied Dementia Care Research: window of opportunity?

12 Challenge Demcare: Management of challenging behaviour at home and in care homes

13 Suppressing BtC in family settings Cum Survival event

14 Challenge Demcare: surprising conclusions? Did not target clinically significant BtC Clinically significant BtC in family care: often missed by specialist CMHTsOP Home-dwelling people (with mild dementia) have higher levels of BtC that those in care homes Individualised biopsychosocial (not stepped care) support for clinically significant BtC Moniz-Cook 2012 Holle 2016

15 Clinically significant BtC [care homes] 25 -item CBS & NPI-NH Care staff reports of common BtC Widely used in UK after BPS report ( Brechin et al 2012) Translated/validated-China; Linguistically valid- Germany Cut-Points - clinically significant BtC ; severe BtC

16 Clinically Significant BtC in family care 24 -item RMBPC & NPI RMBPC (24 items) n % Trouble remembering recent events Forgetting what day it is Asking the same question Losing or misplacing things Difficulty concentrating on a task Appears anxious or worried Appears sad or depressed Starting but not finishing things Arguing, irritability, complaining Awaking carer/other family at night Comments about feeling worthless/burden Trouble remembering significant past events Crying and tearfulness Expressing feelings of hopelessness/sadness about the future Aggressive to others verbally Talking about feeling lonely Doing things that embarrass you Commenting about death of self or others Engaging in behaviour dangerous to self or others Talking loudly and rapidly Comments about feeling like a failure/ not having worthwhile accomplishments Threats to hurt others Threats to hurt oneself Destroying property 6 3.8

17 Individualised formulation and interventions Insert videos here

18 Tool-kit: Assessment summary Health The Person Environment & Behaviour Physical Health Mobility wheelchair bound for the past three years following a stroke Hearing good Vision good Health problems: Vascular Dementia 5 years Stroke (CVA) 3 years ago Depression Skin ulceration current past 4 mths Headaches Prone to Constipation Osteoporosis Hypertension Medication Citalopram - 20mgs daily Simvastatin - 40mgs nocte Aspirin - 75mgs daily Paracetamol - 1gm prn Ramipril - 5mg twice daily Movicol I sachet 2xdaily Calcichew D3-2 tab daily Profore four layer bandaging to leg Betty may be in pain/uncomfortable Betty is a 75-year old widow of a hospital surgeon who was 10 years her senior and died some 15 years ago. She has been a resident at St Andrews care home for three months. Her only child, Emma, visits her at the home most days. Betty s twin sister lives in America and regularly visits the UK to see Betty. Betty was a well-respected, hospital matron who retired 10 years ago. Betty is a firm strong-minded but fair person who enjoys culture, music and reading. Betty is aggressive with most but not all people who provide care. Betty is aggressive several times a day and this has affected Betty and the carers, making some carers feel helpless. When Betty is aggressive, she appears to be trying to get the carers to go away and looks angry. She has been aggressive at all care homes when she could no longer look after herself. Betty is usually aggressive during personal care.

19 Health Checking for signs of discomfort / pain & developing a management plan has not been systematically considered. This could have a spin off in reducing overall irritability. A management plan could include: Actively monitoring for signs of pain and ask Betty location of pain head/ leg ulceration? Offer pain relief, if indicated, prior to helping with dressings Ask the district nurse to check if carers are correctly managing bandages when these require ongoing attention. Schedule passive exercise (assistance to stand and transfer from wheelchair, chair exercises including movement to music, position change) limb massage to minimise risks of further ulceration Monitor signs of discomfort due to constipation; manage by a) Increased liquid intake to reduce potential constipation discomfort b) Review medications since some drugs can increase constipation and c) Review constipation management with oral medicines Action Plan not steps! Test and revise The Care Approach (The Person s psychological/psychosocial needs) Quite often, someone who s already uncomfortable or irritated because they have to have help, can become overwhelmed by too many people in the care environment. Aggression can escalate into tussles, with carers trying to calm the resident and prevent themselves getting hurt. Betty appears to accept care from qualified nurses she may believe that these are the only people able to provide certain types of care. During care interactions carers should reassure her that they understand this. When providing medical or personal care they could talk to her about best nursing practice or conversing (reminiscing) with her about her time as a matron. This type of care is known as emotion- orientated care The Care Environment (Staff / Family Carer and Physical Environmental needs) In-home training sessions, by the specialist community mental health team or a challenging behaviour service, for all carers allocated to support Betty across shifts. The home leader should ensure that carers new to the home, or those who have not received training, are not asked to provide Betty with personal care. Training to include: Hands-on modelling (demonstrating to all staff)of paced personal care provision with one person attending to her alone where possible Remaining calm during verbal abuse Reassuring Betty that you are trying your best even though you are not a qualified nurse Conversing with Betty about best nursing practice and her time as a matron Providing paced personal assistance in a quick but calm manner to reduce her frustration during the care interaction Returning later to complete the task if needed Improve management of discomfort and pain Personalise and pace Betty s care with one carer attending to her at any time, wherever possible Establish in-home staff training sessions for Betty s carers.

20 Towards conceptual stability Case specific formulations for challenging behaviour in dementia care Moniz Cook et al 2012; Holle et al 2016 Systems and contexts - eco-psychosocial interventions (including contextual review for management) Zeisel et al 2016 New Knowledge: Education for practitioners in use of behavioural measures to recognise clinically significant BtC Moniz-Cook. et al 2017

21 Future: Practice & Applied Research Refine and update e-learning; Include training for community practitioners Provide web based recognition tools for Care homes and Family care settings Provide assessment and action planning tools for health; psychological and environmental and contextual / systemic needs Setting specific system intervention actions such as staff training and support /family counselling/ CBT

22 British Psychological Society: Evidence Briefing /news-andpolicy/psychologicaldimensions-dementia Acknowledgements Professor Ian James Newcastle NHS & University of Bradford BPS Dementia Advisory Group

23 Thank you For more information visit