Dementia: Rethinking our approach to behaviour

Transcription

1 Dementia: Rethinking our approach to behaviour Dr Kathryn Lord Research Fellow 1

2 A bit about me: The 3 P s! Psychology Psychiatry Person centredcare 2

3 Challenging behaviours in Challenging behaviours dementia caregiving 3

4 Presentation overview Concept of challenging behaviours Terminology, causes and models Interventions for these behaviours 4

5 Let s just think a minute Just imagine if 5

6 Would you say you had challenging behaviour? 6

7 Diagnostic over-shadowing Everything is due to the dementia diagnosis Dementia Behaviour 7

8 Assumptions about behaviours It s the dementia There is nothing I can do to help That s disgusting Just ignore them They ve always been this way 8

9 Think about how you may have behaved in the past Have you ever refused to do something you ve been asked to do? And we are all unique in how we might respond Have you ever sworn at someone? Behaviour is understandable on level 9

10 Individual nature of dementia 10

11 Fundamental attribution error The tendency to be biased toward positive explanations for our own negative actions. And to be biased towards more negative explanations for the negative behaviour of others. 11

12 Terminology Lets think about what we say 12

13 Terminology explained BPSD Disease modelling Interpreted assigns / symptoms of neuropathology and a marker of disease progression A persons behaviours Psychosocial modelling Interpreted as an interaction between need, behaviour and the way actions of the person are experienced by others 13

14 Cognitive model: PWD Thoughts Where s my mum? I need to get home Why is she trying to take my clothes off? Challenging behaviour Actions Feelings Search for lost people Try to leave building Fend off care staff Anxiety Fear Anger 14

15 Cognitive model: Carer Thoughts She / he s doing that on purpose! Actions Feelings Tell off / reprimand Keep away from her / him Angry Annoyed 15

16 What is it like to experience these behaviours? 16

17 Person-centred approach The person s experience Multiple influences biography, health, interactions, personality Supporting the person, their family and care staff 17

18 Communication A person whose behaviour has meaning Behaviour communicating unmet need 18

19 Cognitive model: Rethinking Thoughts She doesn t understand what s going on He thinks that person is stealing from him Actions Feelings Re-orientate / redirect Change environment etc. Support Care 19

20 Cohen-Mansfield s Unmet Needs Model Lifelong habits & personality Behaviour as a means of fulfilling needs Current condition physical, mental Unmet need Behaviour as a means of communicating needs Environment physical, psychological Behaviour as outcome of frustration 20

21 What is the person trying to tell us? Why in this way? What needs are not being met? Person living with dementia How can we meet this person s needs? 21

22 What causes these behaviors? Internal Hunger Fear Pain Boredom Environment Communication style External 22

23 The context of the behaviour Geoff used to put his coat on and try to leave the house at 5.30pm everyday saying I ve got to get home, I have to leave After speaking with family discovered that was the time he had left work for the past 50 years 23

24 Personalised care 24

25 Support Interventions For the person living with dementia 25

26 Pharmacological interventions Antipsychotics Benzodiazepines Antidepressants Sedatives 26

27 The role of pain The association was the strongest for aggression and anxiety. (Sampson et al., 2015) 27

28 Non-pharmacological approaches Reality Orientation Cognitive Stimulation Therapy Reminiscence Therapy Validation Therapy Psychomotor Therapy Multi-sensory Therapy Music Therapy 28

29 Psychosocial interventions for agitation Systematic review Person centred care Communication skills Dementia Care Mapping Reduced agitation in care home residents (Livingston et al., 2014) 29

30 Carer support interventions 30

31 Relationships have histories 31

32 Caregiving adds a layer to the history 32

33 Impact of dementia on relationships... 33

34 START: STrAtegies for RelaTives Livingston & colleagues at UCL First RCT in the UK to test a manual based therapy for family carers of people with dementia Delivered one-to-one by psychology graduates start 34

35 START intervention Coping with caring Reasons for behaviour Making a behaviour plan Behaviour strategies and unhelpful thoughts Communication styles Planning for the future Introduction to pleasant events and your mood Using your skills in the future 35

36 START Results: Clinically effective Carers receiving START did better than controls at both the 8 months and two year follow-ups. After two years, carers in the control group were seven times more likely to be depressed than those who had received START ((OR) = 0.14 (95% CI: 0.04 to 0.53). Quality of life was higher for carers receiving START than the control group (difference in means = 4.09; 95% CI: 0.34 to 7.83). 36

37 START Results: Cost effective Costs were slightly higher for the START group because of the cost of the intervention. START cost 232 per carer. Carer costs over 2 years were 170 higher in the START group. Patient s costs were 1368 lower in the START group. 37

38 Carer feedback NHS services gave a lot of information at diagnosis; too much negative info at once. I felt START was more supportive and gave smaller bits at a time Sometimes I sit and go through my orange folder and there is a peace and understanding that someone is there with me I felt its OK to be angry, upset, made to feel less guilty I now feel I have all the tools before she gets worse What was an added bonus was that it centered on me rather than my husband. Previously all attention and energy had been focused on them 38

39 How to we make START available in practice? July 2014 Alzheimer s Society Dissemination Grant Train the trainers Research team support / Website 6 month evaluation 12 month evaluation Qualitative interviews 39

40 Train the Trainers Regional 3 hour training session for qualified clinical psychologists and dementia nurses. Introduce START and how to train and supervise others in delivering the intervention. Consider how to begin setting up START locally. Attending the training, the manuals, CD s and all materials are provided free of charge. 40

41 Progress to date October 14 September 15 Locations: London x 2 York Birmingham x 2 Port Talbot Doncaster Edinburgh Cambridge Leicester Teeside 41

42 Implementation feedback Clinical Psychologists have implemented START in some areas. Facilitated by: Existing skills to deliver this type of intervention Buy-in from colleagues Staff resources Research team support 42

43 Ongoing research Managing Agitation and Raising QUality of life in dementia (MARQUE) In care homes and hospital Including the last six months of life DREAMS-START 43

44 Conclusions 44

45 Conclusions Consider language and meaning when using behaviour terminology The PERSON with dementia not the person with DEMENTIA It is possible to live well with dementia 45

46 When caring for people with dementia, we are not working with machinery but are caring for human beings. When they react with challenging behaviour it is not because the machines are faulty, it is because the way they are being treated is flawed 46

47 Thank you to our experts! 47

48 Thank you for listening Acknowledgements: Cathy Greenblat photographs Contact details: Kathryn Lord Website: 48

49 References Knapp M, King D, Romeo R, Schehl B, Barber J, Griffin M et al. (2013) Cost effectiveness of a manual based coping strategy programme in promoting the mental health of family carers of people with dementia (the START (STrAtegies for RelaTives) study): a pragmatic randomised controlled trial. BMJ; 347:f6342. Livingston G, Barber J, Rapaport P, Knapp M, Griffin M, King D et al. (2013) Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial. BMJ ; 347:f6276. Livingston, G. Barber, J, Rapaport, P, Knapp, M. et al. (2014) Long-term clinical and cost-effectiveness of psychological intervention for family carers of people with dementia: a single-blind, randomised, controlled trial. The Lancet Psychiatry, doi: /s (14)00073-x Sampson EL, White N, Leurent B, Scott S, Lord K, et al. (2014) Behavioural and psychiatric symptoms in people with dementia admitted to the acute hospital: prospective cohort study. BR J Psychiatry: 205(3) 49

50 References Sampson EL, White N, Lord K, Leurent B, Vickerstaff V, et al. (2014) Pain, agitation and behavioural problems in people with dementia admitted to general hospital wards: a longitudinal cohort study. Pain 156(4) Cohen-Mansfield J (2000) Theoretical frameworks for behavioural problems in dementia. Alzheimer s Care Quarterly 1:8-21. Brodaty H and Arasaratnam C. (2012) Meta-analysis of nonpharmacological interventions for neuropsychiatric symptoms of dementia. Am J Psychiatry;169(9): doi: /appi.ajp White N, Leurent B, Lord K, Scott S, Jones L, Sampson EL. (2016)The management of behavioural and psychological symptoms of dementia in the acute general medical hospital: a longitudinal cohort study. Int J Geriatric Psychiatry. doi: /gps Álvarez-Avellón T, Arias-Carrión O, Menéndez M (2015) Neuropsychiatric symptoms and associated caregiver stress in geriatric patients with Parkinson s disease. Neurology and Neuroscience DOI: 50