Agitation in dementia. Gill Livingston

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1 Agitation in dementia Gill Livingston

2 And some of the team Gianluca Baio Julie Barber Claudia Cooper Briony Dow Paul Higgs Juanita Hoe Gerry Leavey Louise Marston Stephen Morris Rumana Omar Nishma Patel Penny Rapaport Liz Sampson

3 Funding Acknowledgement: This is independent research commissioned by: UK National Institute for Health Research (NIHR) Health Technology Assessment Programme: HTA 10/43/01 and ESRC/NIHR ES/L001780/1 The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HTA programme, NIHR, ESRC, NHS or the Department of Health. The studies are sponsored by UCL. Neither funders nor sponsors had a role in the study design and the collection, analysis, and interpretation of data and the writing of the article.

4 What I will talk about What is agitation? Why is agitation important in dementia? Drugs? Why not just consider neuropsychiatric symptoms as a whole? What we did. What we found: What works, who for, what length of time and what setting. What doesn t work. What needs more evidence. What it means, why it matters. MARQUE: testing the theory and working out the practice.

5 What is agitation in dementia? Agitation is inappropriate verbal, vocal or motor activity. Encompasses purposeless activity, shouting out, physical and verbal aggression and wandering. It is behavioural component not solely emotional.

6 Why is agitation important in dementia? Dementia is common and costly. Most care home residents have dementia, and residential care contributes substantially to the costs of dementia currently $818 billion a year. Agitation is common, persistent and distressing. 80% of those with clinically significant symptoms still symptomatic 6 months later. Agitation leads to: Excess cost -care breakdown and care home admission. Decreased quality of life. Agitation affects family relationships adversely.

7 Why we don t just use drugs.

8 Antipsychotics Increase cognitive decline; EPSE; mortality. Limited efficacy. Evidence that haloperidol, risperidone, aripiprazole and olanzapine work sometimes. Quetiapine does not. Atypicals increase mortality x in first 90 days. Haloperidol increases 1.5 x more

9 Other drugs - limited efficacy and risks ++ Citalopram - increases QT interval and decreases cognition Benzodiazepines increase cognitive decline. Cholinesterase inhibitors and memantine ineffective. Analgesics - one RCT (non-placebo controlled) improved agitation in people with dementia. Effect size comparable to antipsychotics Preliminary evidence with carbamazepine mirtazepine, Valproate ineffective

10 Dextromethorphan-Quinidine on Agitation in AD Preliminary 10-week phase 2 RCT in AD Efficacious (NPI 1.5; 95% CI, 2.3 to 0.7; P<.001) Generally well tolerated. low-affinity, uncompetitive N-methyl-d-aspartate receptor antagonist, σ1 receptor agonist, serotonin and norepinephrine reuptake inhibitor, and neuronal nicotinic α3β4 receptor antagonist. 7.9 % SAE vs 4.7% placebo Cummings JE, Lyketsos,C. Peskind E et aljama. 2015;314(12): doi: /jama

11 Non-pharmacological interventions for agitation in dementia: systematic review of randomised controlled trials. Gill Livingston, Lynsey Kelly, Elanor Lewis- Holmes, Gianluca Baio, Stephen Morris, Nishma Patel, Rumana Z. Omar, Cornelius Katona, Claudia Cooper DOI: /bjp.bp Published 1 December 2014

12 What we did 1. Systematically review nonpharmacological interventions 2. Consider: 1. How long it worked for 2. Severity of agitation 3. Setting in which it works

14 Analysis Calculated standardised effect sizes (SES;95% CI) to compare studies using a common effect measure. used data from the last time point to estimate the SES We recalculated results for studies not directly comparing intervention and control groups Meta-analysis impossible as required homogenous interventions with same outcome measure.

15 Interventions which worked - in some circumstances Activities Music therapy to a protocol Sensory interventions Supervised person centred care Supervised communication skills Dementia mapping

Activities Five included RCTs implemented group activities in care homes (e.g. cooking, storytelling) symptomatic agitation (SES range =0.2 to 1.05) while in place.

16 Activities Five included RCTs implemented group activities in care homes (e.g. cooking, storytelling) symptomatic agitation (SES range =0.2 to 1.05) while in place. Individualising activities did not cause significant additional reductions in agitation. There is no evidence for those who are severely agitated or who are not resident in care homes.

overall agitation immediately. SES 0.5-0.

17 Music therapy by protocol Music therapist warm up with a well known song, listening to, then joining in with music In care homes this overall agitation immediately. SES There is no evidence for people with severe agitation or outside care homes No evidence it works over long term

18 Sensory interventions Sensory interventions e.g. massage, massage and music, multisensory intervention. symptomatic agitation, and clinically significant agitation, during the intervention. Therapeutic touch (healing based touch focusing on person as a whole) was not superior to usual treatment. No evidence about long term or outside care homes.

19 Person centred care; communication skills; dementia care mapping Six RCTs in care homes to change paid carer s perspective with supervision Communication and thoughts, to see and treat people with dementia as individuals vs task focussed. PCC and CS symptomatic and severe agitation, immediately. SES= and and up to six months. Dementia care mapping severe agitation, SES= 1.4, immediately and 1.5 and four months afterwards.

20 Interventions which do not work Light therapy Aromatherapy Training family carers in behavioural and cognitive interventions

21 Light therapy Light therapy hypothesised to reduce agitation through manipulation of the disrupted circadian rhythms of dementia, by 30-60mins of daily bright light exposure. Three large RCTs showed light therapy increases agitation. The SES was from 0.2 for improvement to 4.0 for worsening symptoms.

22 Aromatherapy Blinded assessments found ineffective. Results of non-blinded studies mixed. Aromatherapy not been shown to work for agitation

23 Training family caregivers in behavioural management or CBT for people with dementia living at home Three RCTs Ineffective (harmful) for severe agitation No immediate or long term effect to decrease agitation symptoms

25 Agitation Sensory interventions, activities and music therapy by protocol reduce agitation and decrease symptomatic agitation in care homes while they are happening. No evidence for those who are severely agitated.

26 Communication Training paid caregivers in communication or person centred care skills or dementia care mapping with supervision Effective for symptomatic and severe agitation, during the intervention and for six months. Some evidence that it helps prevent emergent agitation. The standardised effect sizes suggest they are similarly efficacious.

27 What is agitation in dementia? Our hypothesis Way of communicating feeling bad Pain, constipation, thirst, boredom, lack of touch, loneliness, discomfort Brain changes Communication and listening plus sensory activity done well may make the difference Clearly best to prevent Need effectiveness and cost effectiveness RCT Lots more work at home, where most people are

UK cost of agitation in dementia Adjusted annual cost/person with AD with significant agitation = 33 075 Vs 28 983 Excess cost associated with agitation = 4091/person/year. So.

28 UK cost of agitation in dementia Adjusted annual cost/person with AD with significant agitation = Vs Excess cost associated with agitation = 4091/person/year. So.agitation accounts for 12% of health and social care costs of AD each year. The expected excess cost associated with agitation in people with AD is therefore 2.0 billion a year. Potential to save money ++ with effective interventions.

29 What is MARQUE? The MARQUE project: Managing Agitation and Raising QUality of life in dementia Funded by ESRC/NIHR as part of the PM's 'Challenge on Dementia' Aims to increase knowledge about agitation in dementia in all settings

30 MARQUE as Multiple Streams Stream 1 - Theoretical understanding of personhood and agitation. Stream 2 - Longitudinal study of agitation, quality of life and coping strategies in care homes. Stream 3 - Development and testing of intervention in care homes Stream 4 - Qualitative exploration of agitation and family carers coping at home. Stream 5 - End of life and agitation: Ethnographic study of people with dementia, families and paid carers. Stream 6 - Pilot intervention at end of life.

Stream 1 Conceptualisation of personhood Essential components of personhood e.g. agency, consciousness, identity, rationality and reflexivity?

31 Stream 1 Conceptualisation of personhood Essential components of personhood e.g. agency, consciousness, identity, rationality and reflexivity? Is it a moral absolute of all human beings? Is it a matter of degree? Kitwood does not distinguish between the metaphysics of personal identity and the moral standing of persons.

32 How are we doing - Stream 2? Really well! We have recruited 97 care home clusters nationally We currently have 4111 people consented to the study: 1602 staff 1443 residents 1066 relatives

33 Testing our model - Agitation level in homes Agitation associates Less family visits More dysfunctional coping in staff Staff numbers Less activities Environment (TESS) Possible confounders: Age; severity of dementia; type of home Agitation leads to higher care costs.

34 preliminary analysis 84 care homes: median age residents age 85; ¾ female 45 have a mean score of CMAI of >45 Median ranges Commonest behaviour: general restlessness Least common: eating or drinking inappropriate substances Significant difference between care homes of nearly each individual type of agitated behaviour

35 What are we doing next? Stream 3 Randomised control study with 20 care homes We have developed a supervised manual for staff training Currently finalising the manuals and training Research Assistants to pilot the study 20

36 Development Knowledge-systematic review Form- START manual (homework, information with task, relaxation) Content - using qualitative interviews with staff and using their words Make it concrete games, DICE

37 MARQUE Session 1: Getting to know the person with dementia Session 2: Pleasant Events Session 3: Improving Communication Session 4: Understanding Agitation Session 5: Practical Responses and Making a Plan Session 6: What works? Using skills and strategies in the future

Each session will include A recap on the

the last session and how you got on with the

A discussion about a new topic for that session.

sessions A new way of reducing stress The

They were mums, you know, they were going to

38 Each session will include A recap on the previous session A chance for you to discuss the last session and how you got on with the exercises. A discussion about a new topic for that session. A practical exercise for you to try out between sessions A new way of reducing stress The residents, you see, they're the same as you are. They were mums, you know, they were going to college, they studied, they were driving, they're like us, today they are old, tomorrow I'm old. (Nurse)

39 Stream 4 - At home Qualitative interviews Carers helped by: Someone to take over care immediately Relaxation Keeping own interests and friends Seeking help immediately Not about reducing agitation but coping with it

40 Stream 5 - Agitation and dementia in hospitals One ward: nurses not responding call bells out of reach data e.g. hourly checks fabricated One ward staff respond Sometimes soothing Sometimes shouting More response to basic care needs Lack of recognition of pain even when patient said it. Some think people with dementia can t feel pain

41 What impact do we want? To make managing agitation as much a part of care as providing food, shelter and hygiene to improve living and dying with dementia.

Managing agitation in dementia using non-pharmacological therapies

Managing agitation in dementia using non-pharmacological therapies Gill Livingston Lynsey Kelly, Elanor Lewis-Holmes, Gianluca Baio, Rumana Omar, Stephen Morris, Nishma Patel, Cornelius Katona, Claudia