Managing agitation and raising quality of life in

Managing agitation and raising quality of life in care home residents with dementia: what we did, and what we learnt Dr Penny Rapaport CI Professor Gill Livingston The team Agitation Inappropriate verbal, vocal, or motor activity Common, distressing, persistent, and costly (excess cost 2 bn/year)1-5 Carers often know little about what it means or how to manage it Drugs have limited effectiveness, and can be harmful There is potential to improve peoples lives and save money by developing clinically and cost effective interventions

MARQUE streams Theoretical understanding of personhood and agitation Longitudinal study of agitation, quality of life, and coping in CHs Development and testing of intervention in CHs Qualitative exploration of agitation and family carer coping at home Ethnographic study of dementia and agitation in CHs and hospitals Pilot intervention to improve quality of life at end of life Stream 3 Development and testing of intervention in care homes 1. Systematic reviews of what works (Livingston et al, 2014; Rapaport et al, 2017) 2. Interviews with care home staff

(Rapaport et al, 2018) 3. Piloting the intervention Lack of time & resources Building interventions into routine care On-site support Lack of team ownership & engagement Improving communication

Enhanced understanding of residents What makes it harder? What makes it easier? Reflection facilitated good practice Coping with aggression Fear of getting attached

Whole team attendance Concern regarding skills & practices Active & interactive learning methods Seeing positive effects How do staff manage agitation? We conducted qualitative interviews with 25 staff in six

care homes We explored how staff understand and respond to agitation and what factors impact on how it is managed 46% of staff interviewed spoke English as a first language How do staff manage agitation? Theme 1: Preventative approaches: Responding to individual need Seeing the person not the disease Connecting with previously valued activities

Theme 2: Strategies to redu Drug interve ntions Multi-professional working Emotional impact on staff Feeling disheartened It can make you feel sometimes, when things arent working that youve failedSometimes you do go home disarmed, because you have not been able to do the best for that person. (Activities coordinator)

Trying not to react I think being calm is a big thing, and not reacting, you know, when youre getting smacked in the face, some peoples natural reaction would be to say something, usually. (Care assistant) Feeling frightened They are scared. It doesnt mean they dont do it, but you know what I mean? While youre doing things, youre not doing it with all the openness and things, you do it with an oohf. (Care assistant) Influencing factors The care home

industry (Socio-political factors) Media show the worst aspects of care It's a giant faceless organisation Task focused vs person centred care (Organisational factors) Competing demands on staff time Management support Learning culture Communication is key (Social and team factors) Good communication in the team

Maintaining relationships with relatives Building relationships with residents Staff inclination towards caring (Individual factors) Personally motivated vs. in it for money Emotional distancing vs. compassion Flexible approach You can only do your best Co-producing MARQUE MARQUE intervention 1 Getting to know the person with dementia Key approach

On-going support 2 Pleasant events 3 Improving communication 4 Understanding agitation DICE7 5 Practical responses and making a plan 6 What works? Using skills and strategies in the future Flexible delivery catch ups Staff wellbeing and coping skills Whole team approach

Trying out between sessions Build on existing skills Build change into routine care Champions and action plans Initial intervention testing 1 3 meetings to facilitate set up and delivery care home

6 sessions 2 hour sessions delivered 3x 27/32 (84%) eligible staff attended all sessions Therapist fidelity was high 3 months supervision Qualitative and quantitative process evaluation conducted Delivering the intervention From facilitator reflective logs. Better relationships with residents because of pleasant events Understanding reasons behind why the resident may be agitated,

resulting in less blame Staff were more relaxed about trying new things Staff were reminded of best practices and built confidence in taking time to get to know their residents Training enabled staff to reflect upon how important their job is Participating in the intervention And the MARQUE project has helped us in a lot of ways in areas where we didnt know Making them feel comfortable with us, to do their personal care makes them feel more relaxed, so it makes it more easier and happier for them and also us

Increased knowledge and skills Improved relationship with residents Feeling confident and relaxed Working better as a team How to, you know, get

more personal, get closer to the service user, and knowing their likes and dislikes Yes. It's just to do with the people interacting, you know, being a lot more helpful to each other is what I'm saying RCT: Objectives Does our intervention and strategy for changing care home practices decrease the mean level of agitation in residents with

dementia eight months later, compared with usual practice? Improve quality of life? Reduce agitation and NPS? Cost-effective? Staff coping, burnout, competence Abuse RCT: Design Eight-month parallel-group, superiority, cluster RCT 20 care homes. 1:1 intervention (189) vs TAU (214) Masked outcome assessment Primary outcome: Agitation (CMAI total) Secondary outcomes: DEMQOL, NPI, MCTS Cost effectiveness Staff burnout (MBI) and Sense of competence (SCIDS)

RCT: Results Right direction but not significant Agitation: RC = -0.40 (95% CI = -3.89, 3.09) Antipsychotics: OR = 0.66 (95% CI = 0.26, 1.69) Any abusive behaviour: OR = 0.67 (95% CI = 0.43, 1.05) Almost/never positive behaviour: OR = 0.78 (95% CI = 0.43, 1.43) Well delivered Attendance: 84% (range 67-100%), 79% group Fidelity: 37.7/40 (range 34.0-39.3) Supervision 640 minutes (IQR 581,885) RCT: Interpretation This study does not support the MARQUE intervention being implemented in care homes for agitation Suggests (with previous evidence) higher intensity interventions may be required for people with agitation in care homes. delivered by professional staff with whole-home management

and cultural change, implementing social and activity times with residents who are agitated, a longer change period. Not powered to detect change in abuse / antipsychotics Not intensive enough? Too ambitious? Design? Other thoughts??? MARQUE outputs Higgs P, Gilleard C. Interrogating personhood and dementia. Aging & mental health. 2016;20(8):773-780. Kadri A, Rapaport P, Livingston G, Cooper C, Robertson S, Higgs P. Care workers, the unacknowledged persons in person-centred care: A secondary qualitative analysis of UK care home staff interviews. PloS one. 2018;13(7):e0200031. Livingston G, Barber J, Marston L, et al. Prevalence of and associations with agitation in residents with dementia living in care homes: MARQUE cross-sectional study. BJPsych Open. 2017;3(4):171-178. Robertson S, Cooper C, Hoe J, Hamilton O, Stringer A, Livingston G. Proxy rated quality of life of care home residents with dementia: a systematic review. International psychogeriatrics. 2017;29(4):569581. Cooper C, Rapaport P, Robertson S, et al. Relationship between speaking English as a second language and agitation in people with dementia living in care homes: Results from the MARQUE (Managing Agitation and Raising Quality of life) English national care home survey. International journal of

geriatric psychiatry. 2018;33(3):504-509. Cooper C, Marston L, Barber J, et al. Do care homes deliver person-centred care? A cross-sectional survey of staff-reported abusive and positive behaviours towards residents from the MARQUE (Managing Agitation and Raising Quality of Life) English national care home survey. PloS one. 2018;13(3). MARQUE outputs Rapaport P, Livingston G, Murray J, Mulla A, Cooper C. Systematic review of the effective components of psychosocial interventions delivered by care home staff to people with dementia. BMJ Open. 2017;7(2). Rapaport P, Livingston G, Hamilton O, et al. How do care home staff understand, manage and respond to agitation in people with dementia? A qualitative study. BMJ open. 2018;8(6). Clinical and cost-effectiveness of the Managing Agitation and Raising QUality of LifE in dementia (MARQUE) intervention for agitation in people with dementia in care homes: a single-blind cluster randomised controlled trial. Livingston G, Barber J, Marston L, Stringer A, Panca M, Hunter R, Cooper C, Laybourne A, La Frenais F, Reeves S, Manela M, Lambe K, Banerjee S, Rapaport P Lancet Psychiatry Hoe J, Jesnick L, Turner R, Leavey G, Livingston G. Caring for relatives with agitation at home: a qualitative study of positive coping strategies. BJPsych open. 2017;3(1):34-40.

Thank you for listening! @MARQUEProject [email protected] References 1. Ryu S-H, Katona C, Rive B, Livingston G. Persistence of and changes in neuropsychiatric symptoms in Alzheimer disease over 6 months: the LASERAD study. The American journal of geriatric psychiatry. 2005;13(11):976-983. 2. Selbk G, Engedal K, Bergh S. The prevalence and course of neuropsychiatric symptoms in nursing home patients with dementia: a systematic review. Journal of the American Medical Directors Association. 2013;14(3):161-169. 3. Savva GM, Zaccai J, Matthews FE, Davidson JE, McKeith I. Prevalence, correlates and course of behavioural and psychological symptoms of dementia in the population. The British Journal of Psychiatry. 2009;194(3):212-219. 4. Morris S, Patel N, Baio G, et al. Monetary costs of agitation in older adults with Alzheimer's disease in the

UK: prospective cohort study. BMJ open. 2015;5(3). 5. La Frenais FL, Bedder R, Vickerstaff V, Stone P, Sampson EL. Temporal Trends in Analgesic Use in Long Term Term Care Facilities: A Systematic Review of International Prescribing. Journal of the American Geriatrics Society. 2017. 6. Livingston G, Kelly L, Lewis-Holmes E, et al. Non-pharmacological interventions for agitation in dementia: systematic review of randomised controlled trials. The British Journal of Psychiatry. 2014;205(6):436-442. 7. Kales HC, Gitlin LN, Lyketsos CG. Assessment and management of behavioral and psychological symptoms of dementia. bmj. 2015;350(7):h369.

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