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).

1. Raising quality of life in people living
with dementia - MARQUE Report launch
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2. Welcome
Dr Brian Beach, ILC
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3. For you, what is the “hot topic” around
agitation & dementia?
Your answers to our pre-event question
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4. Introduction to the MARQUE Project
Professor Gill Livingston, UCL
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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. Some of
the team

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. MARQUE streamsStream 1
Personhood
Care workers
People with dementia and agitation at end of life
People with dementia and agitation at home

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. Stream 3 :
Co-production
Randomised controlled trial of MARQUE intervention
for agitation in care homes

11. • SFAMILIESTREA
Stream 4
How do families cope with agitation at home

12. Stream 5 - Ethnographic study in
care homes and hospitals of
people with dementia who may
be at end of life

13. • SFamiliestrea
Stream 6 - Development and pilot
intervention for agitation at end of life

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

16. Thank you

17. Panel 1: Formal and informal carers
Family carers
Understanding agitation
Personhood
Burnout
Abuse
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18. Family Carers
Dr Juanita Hoe, UCL
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19. 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.

20. 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

21. 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

22. Understanding agitation
Dr Penny Rapaport, UCL
#MARQUE2019

23. 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

24. How do staff manage
agitation?
Theme 1: Preventative approaches: Responding to individual need
Theme 2: Strategies to reduce agitation

25. 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

26. Personhood
Professor Paul Higgs, UCL
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27. 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).

28. 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

29. 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

30. Burnout
Professor Gill Livingston, UCL
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31. 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?

32. 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

33. Abuse
Professor Claudia Cooper, UCL
#MARQUE2019

34. 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

35. 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%)

36. • 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

37. Q&A
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38. Word cloud
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39. Panel 2: People living with dementia
Agitation and quality of life
Interventions:Trying to change
Cost of agitation
Advanced dementia
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40. Agitation and quality of life
Dr Anne Laybourne, UCL
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41. Agitation & quality of life

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. 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

44. 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

45. Interventions:Trying to change
Professor Gill Livingston, UCL
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46. 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.

47. 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).

48. 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

49. Cost of agitation
Monica Panca, UCL
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50. 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).

51. 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)

52. 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.

53. Advanced dementia
Dr Liz Sampson, UCL
#MARQUE2019

54. 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

55. 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

56. 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.

57. Response
Dr James Pickett, Alzheimer’s Society
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58. Q&A
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59. Word cloud
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60. Closing remarks
Professor Sube Banerjee, Brighton and Sussex Medical School
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61. Close
Dr Brian Beach, ILC
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62. Thank you for coming!
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