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Raising quality of life in people living with dementia – MARQUE Report launch

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Presentation of new findings related to people with dementia and their carers from a prestigious research project led by Prof Gill Livingston at UCL, MARQUE (Managing Agitation and Raising Quality of Life).

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Raising quality of life in people living with dementia – MARQUE Report launch

  1. 1. Raising quality of life in people living with dementia - MARQUE Report launch Menti.com – code 75 28 34 #MARQUE2019
  2. 2. Welcome Dr Brian Beach, ILC #MARQUE2019
  3. 3. For you, what is the “hot topic” around agitation & dementia? Your answers to our pre-event question Menti.com – code 75 28 34 #MARQUE2019
  4. 4. Introduction to the MARQUE Project Professor Gill Livingston, UCL #MARQUE2019
  5. 5. The MARQUE project: Managing Agitation and Raising QUality of lifE in dementia Gill Livingston Funded by ESRC/NIHR as part of the PM's 'Challenge on Dementia' Aims to increase knowledge about agitation in dementia in all settings What is MARQUE?
  6. 6. Some of the team
  7. 7. 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. Common, distressing, persistent, and costly (excess cost £2 bn/year)
  8. 8. MARQUE streamsStream 1 Personhood Care workers People with dementia and agitation at end of life People with dementia and agitation at home
  9. 9. STREAM 2 Care teams using more dysfunctional coping strategies are associated with people with dementia having a worse subsequent quality of life, and that is more so when their agitation levels are higher Longitudinal study of agitation, quality of life, and coping in care homes
  10. 10. Stream 3 : Co-production Randomised controlled trial of MARQUE intervention for agitation in care homes
  11. 11. • SFAMILIESTREA Stream 4 How do families cope with agitation at home
  12. 12. Stream 5 - Ethnographic study in care homes and hospitals of people with dementia who may be at end of life
  13. 13. • SFamiliestrea Stream 6 - Development and pilot intervention for agitation at end of life
  14. 14. Legacy – increasing capacity 1. Three PhDs and 4th in doctoral school 2. Four DClinPsych students 3. Two to medical school 4. One professor, one associate professor and one reader 5. One in policy in civil service 6. Large and small grants building on the research
  15. 15. Thank you
  16. 16. Panel 1: Formal and informal carers Family carers Understanding agitation Personhood Burnout Abuse #MARQUE2019
  17. 17. Family Carers Dr Juanita Hoe, UCL #MARQUE2019
  18. 18. What did we do? We interviewed 18 family carers of people with moderate to severe dementia and agitation living in the community. We asked carers to talk about their experiences and explored the effectiveness of strategies used.
  19. 19. What did we find? Carers reported a range of agitated behaviours  Most common were repetitive behaviours  Followed by verbal aggression  Least common were acts of physical aggression It took time for them to accept that agitation was part of the dementia They developed flexibility in their approach
  20. 20. Strategies for coping with agitation in dementia Problem solving Strategies to prevent agitation Working out and responding to the cause of agitated behaviour Keeping a routine Strategies for reducing agitation Communication Providing comfort and reassurance Activities and interests Strategies to prevent agitation escalating Being calm, respectful and avoiding arguments Keeping people safe Allowing the behaviour to continue Walking away Emotion focused Looking after themselves Emotional support Time for themselves Practical support Paid support Accepting the problem Understanding agitation as part of dementia Allowing the behaviour to continue Walking away
  21. 21. Understanding agitation Dr Penny Rapaport, UCL #MARQUE2019
  22. 22. 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
  23. 23. How do staff manage agitation? Theme 1: Preventative approaches: Responding to individual need Theme 2: Strategies to reduce agitation
  24. 24. Influencing factors The care home industry (Socio-political factors) Task focused vs person centred care (Organisational factors) Communication is key (Social and team factors) Staff inclination towards caring (Individual factors) • Media show the worst aspects of care • It's a giant faceless organisation • Competing demands on staff time • Management support • Learning culture • Good communication in the team • Maintaining relationships with relatives • Building relationships with residents • Personally motivated vs. in it for money • Emotional distancing vs. compassion • Flexible approach • You can only do your best
  25. 25. Personhood Professor Paul Higgs, UCL #MARQUE2019
  26. 26. We asked: • How does the concept of ‘personhood’ which is at the heart of ‘person-centred’ care relate to the care staff working in care homes? • Kitwood defined personhood as:“a standing or a status that is bestowed on one human being, by another in the context of relationship and social being” • Denying personhood creates a “malign social psychology” and leads to stigma • The importance of maintaining staff wellbeing for the effective care of residents. Kadri, A., Rapaport, P., Livingston, G., Cooper, C., Robertson, S., & Higgs, P. (2018). Care workers, the unacknowledged persons in person-centred care: A secondary qualitative analysis of UK care home staff interviews. PloS one, 13(7), e0200031. Secondary data analysis of interviews of UK care home staff, conducted in 2014 and 2015. During the analysis, we found a secondary theme relating to an unacknowledged personhood of staff We carried out a qualitative study of 25 staff (17F, 8M) from 6 homes (3 residential, 3 nursing).
  27. 27. We found: • “I’ve said, you know, don’t feel the pressures of care, because there’s so many pressures with care, like getting things done by a certain time, especially with personal care. Especially if that resident is in a wet bed, they’ve taken their pad off, or anything like that, you know, you feel the pressure of people above you saying, do the personal care because if the family come in and see them like that they’re going to think it’s neglect”. Delivering Person Centred Care Organisational issues Identity of care staff Views of care role Difficulties of caring for people with dementia unacknowledged e.g. agitation/’abuse’ Support and understanding often inadequate Personal identity and experiences not respected Staff seen as instruments of care Difficulties of person- centred vs task oriented care unacknowledged Organisational pressures make caring difficult, out of control for carers Feeling out of control and unimportant
  28. 28. We found: • Care staff often indicated that they did not feel that they were accepted as dignified persons in their own right. • Staff often felt they had little control or influence over working conditions. • Care staff are required to attribute personhood to residents in order to care for them effectively • Care staff are expected to accept the behaviour of residents even if it is potentially detrimental to their wellbeing
  29. 29. Burnout Professor Gill Livingston, UCL #MARQUE2019
  30. 30. What did we want to know? • The first study of the link between staff burnout level and future staff turnover rates • Is there high burnout in care home staff Does staff burnout lead to future turnover?
  31. 31. Findings and what does it mean? • 2062 care staff completed the Maslach Burnout Inventory (MBI). • Staff average yearly turnover =22.7%. • Low mean burnout (emotional exhaustion; EE: 15.67, depersonalisation; DP: 2.94; 2.94, personal accomplishment; PA 39.19). • We found no association between staff burnout and turnover rate. • 352 (17.1%) staff reported high EE. • Younger staff age had higher burnout in all MBI subscales (EE coefficient -0.09;. DP-0.02; -0.04,. PA0.05). • Speaking English as a second language predicted higher EE (1.59), • male staff had higher DP (0.02) • Staff working only night shifts had lower PA (-2.08; - 4.05,-1.30). • There is no association between burnout and turnover. • It is a myth that care home staff all have high burnout • There are at risk groups that experience high burnout
  32. 32. Abuse Professor Claudia Cooper, UCL #MARQUE2019
  33. 33. We asked: • How many staff would anonymously report witnessing/using positive and abusive or neglectful behaviours in last three months: Never almost never sometimes most of the time all of the time • Are homes where more abusive/neglectful behaviours are reported characterised by: Residents neuropsychiatric symptoms Lower quality environment residents permanent staff Staff burn-out depersonalization Cooper, C., Marston, L., Barber, J., Livingston, D., Rapaport, P., Higgs, P., & Livingston, G. (2018). 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, 13 (3), e0193399. doi:10.1371/journal.pone.0193399
  34. 34. We found: Reported as happening never or almost never Of all carers Care homes with any reports Taken resident out for their enjoyment 34% 97% Planned an activity that fits their interests 15% 85% Involved a resident’s family in care planning 13% 85% Spent time getting to know a resident 2% 25% Enjoyed spending time with a resident to keep them company 1% 23% Talked to a resident nicely while giving personal care 1% 20% • 1544 care home staff took part; only 20 staff who took part in MARQUE declined • Staff reported that most of the time staff • spoke nicely to residents during personal care (98%) • enjoyed spending time keeping them company (57%) • spent time to get to know them (63%)
  35. 35. • Any abusive/ neglectful act reported as happening sometimes or more frequently: • by 763 (51%) [95% CI 47% - 54%] of carers • In 91 (99%) [94% - 100%] of care homes Reported as happening never or almost never Of all carers Care homes any reported Hit or shaken a resident 0.1% 1% Threatened to use physical force on 1% 21% Shouted, insulted or spoken harshly to 5% 53% Made wait for care 26% 96% Avoided due to challenging behaviour 25% 91% Not given enough time for food 19% 88% Not taken enough care when moving them 11% 73% Ignored while giving care or when they ask for help 8% 63% Isolated 5% 49% Told they will be sent away 2% 24% Residents neuropsychiatric symptoms Lower quality environment residents permanent staff Staff burn-out depersonalization
  36. 36. Q&A Menti.com – code 75 28 34 #MARQUE2019
  37. 37. Word cloud Menti.com – code 75 28 34 #MARQUE2019
  38. 38. Panel 2: People living with dementia Agitation and quality of life Interventions:Trying to change Cost of agitation Advanced dementia #MARQUE2019
  39. 39. Agitation and quality of life Dr Anne Laybourne, UCL #MARQUE2019
  40. 40. Agitation & quality of life
  41. 41. QUALITY OF LIFE (emotional, physical, spiritual, social, psychological) Workforce Ratio staff:resident Training, competence Family/friends Emotional comfort Meaningful activity Physical, cognitive Environment Lighting, outdoor space, communal areas
  42. 42. QUALITY OF LIFE (emotional, physical, spiritual, social, psychological) Workforce Ratio staff:resident Training, competence Family/friends Emotional comfort Meaningful activity Physical, cognitive Environment Lighting, outdoor space, communal areas
  43. 43. What might explain these findings? 1. Coping strategies are used within the confines of the rules of a provider, an individual care home, or a team/shift (culture) 2. Availability and accessibility of pleasant, meaningful activities 3. Coping questionnaire may be picking up wider life stresses, not work-related 4. Reluctance to report dysfunctional coping To what extent do you agree?... menitmeter
  44. 44. Interventions:Trying to change Professor Gill Livingston, UCL #MARQUE2019
  45. 45. Clinical and cost-effectiveness of the MARQUE intervention for agitation in people with dementia in care homes Randomised controlled trial We asked would the MARQUE intervention be clinical and cost effective in care homes? Six -session evidence-based interactive intervention • Relaxation exercises every session 1. Getting to know the person with dementia 2. Increasing pleasant events 3. Improving communication between staff and with residents 4. Understanding agitation 5. Practical responses. 6. The final session compiled what had worked as a future plan • Followed by a supervision period.
  46. 46. What did we find? • Randomised 10 homes/189 residents to intervention and 10 homes/215 residents to usual care. 84% staff completed all sessions. • Agitation- primary outcome data for 155 intervention/166 TAU residents showed no evidence that intervention was superior. • Adjusted mean difference: CMAI -0.40 (95% CI -3.89, 3.09; p=0.8226) • Other outcomes • Possible abusive acts Odds Ratio 0.67 (95% CI 0.43-1.05; p=0.0790). • Antipsychotic prescribing Odds Ratio (OR) 0.66; 0.26, 1.69 p=0. 3880) • Cost difference was £204 (95% -£215 to £623) • Cost-effectiveness- MARQUE intervention has a 62% probability of cost-effectiveness at a willingness to pay of £20,000 and 77% at £30,000. • Mean quality adjusted life years difference 0.015 (95% CI -0.004 to 0.034).
  47. 47. What does it mean? • 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. • The possible decrease in abuse and antipsychotic prescribing alongside the cost-effectiveness data points to the potential for lower intensity, less costly interventions improving some aspects of life for care home residents and improve care practices. 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
  48. 48. Cost of agitation Monica Panca, UCL #MARQUE2019
  49. 49. Resource utilisation We investigated: • Resource utilisation for care home residents with dementia and different levels of agitation • Costs of residents with and without clinically significant symptoms of agitation over and above the cost of the care home. • Relationship between residents’ health and social care costs and severity of agitation Panca M, Livingston G, Barber J, Cooper C, La Frenais F, Marston L, Hunter RM. Healthcare resource utilisation and costs of agitation in people with dementia living in care homes- the Managing Agitation and Raising QUality of LifE in Dementia (MARQUE) study. VALUE IN HEALTH. ELSEVIER SCIENCE INC. 21: S124 (1 page).
  50. 50. Costs of residents with and without clinically significant symptoms of agitation Resource use CMAI ≤45 CMAI >45 Difference N Mean (95%CI) N Mean (95%CI) Mean (95%CI) Overnight inpatient stay 64 £10,761.23 (£9,808.52 to £11,713.95) 52 £11,054.83 (£9,904.20 to £12,205.46) £293.60 (-£1,170.95 to £1,758.15) Outpatient contacts 182 £ 431.04 (£393.91 to £468.18) 116 £398.33 (£363.70 to £432.96) -£32.72 (-£86.64 to £21.21) Accident and Emergency contacts 82 £ 439.46 (£408.87 o £470.05) 78 £467.08 (£427.03 to £507.12) £27.61 (-£22.08 to £77.31) Primary care, community health or emergency contacts 690 £765.88 (£685.28 to £846.47) 483 £802.76 (£699.24 to £906.29) £36.89 (-£92.52 to £166.29) Social care contacts 120 £166.43 (£127.17 to £205.68) 79 £274.52 (£56.36 to £492.68) £ 108.09 (-£73.53 to £289.72) Community based service contacts 521 £ 420.24 (£350.47 to £490.00) 354 £431.43 (£358.60 to £504.26) £11.19 (-£92.44 to £114.83) Other medical professionals contacts 201 £1,110.43 (£846.75 to £1,374.10) 159 £1,092.87 (£804.97 to £1,380.77) -£17.56 (-£407.98 to £372.86) Prescriptions 838 £312.81 (£276.23 to £349.39) 547 £360.82 (£316.66 to £404.99) £48.01 (-£9.59 to £105.62) Total cost 853 £2,410.21 (£2,158.74 to £2,661.67) 568 £2,800.66 (£2,451.74 to £3,149.58) £ 390.45 (-£28.72 to £809.63)
  51. 51. Relationship between residents’ health and social care costs and severity of agitation Covariates Cost ratio (95% CI) CMAI scores 1.005 (1.001-1.010) Age (years) 1.002 (0.991-1.013) Female 0.942 (0.785-1.131) Dementia severity Very mild Reference Mild 0.786 (0.561-1.101) Moderate 0.888 (0.641-1.231) Severe 0.915 (0.663-1.261) Care home type Nursing care home Reference Personal care (residential) home 1.403 (1.088-1.810) Nursing & personal care home 1.180 (0.924-1.508) Dementia registered care home 0.802 (0.593-1.086) Dementia specialist care home 1.027 (0.865-1.220) We concluded: • Agitation in people with dementia living in care homes contributes significantly to the overall costs increasing as the level of agitation increases(cost ratio 1.005, 95%CI 1.001 to 1.010) • Residents with the highest level of agitation cost nearly twice as much as those with the lowest levels of agitation • Living in residential care homes (without taking into account the care home costs) was a significant predictor of additional annual costs (cost ratio 1.403; 95%CI 1.088 to 1.810). • The excess annual cost of agitation was £1,125.35 accounting for 44% of the health and social care costs of dementia in care homes.
  52. 52. Advanced dementia Dr Liz Sampson, UCL #MARQUE2019
  53. 53. We asked For people with dementia who may be nearing end of life: • What causes agitation? • How does this manifest in acute hospitals and care homes? • How do staff and carers understand and manage this? • Can we develop and test a simple intervention to improve care for agitation towards end of life? (1) Field note observations (2) Structured observations (3) In-depth interviews Analysis and synthesis Develop and test staff training package Care homes Hospital Wards
  54. 54. We found Interviews “We are really suffering, we really need more staff in our care of the elderly wards, because we have a lot to do” Observations …for most of his interaction it felt like a means to an end - to prevent aggression - and there was no interest in the cause of the agitation… Data Chastising speech and looking but not intervening more common in the setting with least institutional support Personhood “Agency” Engagement empowerment institutional support
  55. 55. We developed and tested Understanding Engaging Empowering Feasibility study in 3 care homes • 56 staff in total received training • 84% attended ≥ 3 sessions • Recruited • 28 residents • 13 family carers • Data collected on: • Agitation (CMAI) • Pain (PAINAD) • QoL (QUALID) • Symptom management (SMEOLD) • DeMQol Proxy • Satisfaction (SWCEOLD) it helped me to really loosometimes it’s not tired, it’s pain …you want to sleep a little bit more. So, we would be able to put person centred care, more into action.
  56. 56. Response Dr James Pickett, Alzheimer’s Society #MARQUE2019
  57. 57. Q&A Menti.com – code 75 28 34 #MARQUE2019
  58. 58. Word cloud Menti.com – code 75 28 34 #MARQUE2019
  59. 59. Closing remarks Professor Sube Banerjee, Brighton and Sussex Medical School #MARQUE2019
  60. 60. Close Dr Brian Beach, ILC #MARQUE2019
  61. 61. Thank you for coming! Menti.com – code 46 01 79 #MARQUE2019