The PerCEN Study

Supporting client and

care outcomes in the

residential dementia care

setting.

Lynn ChenowethProfessor of Aged & Extended Care

NursingUniversity of Technology Sydney

andSouth Eastern Sydney Local Area Health

Service, Australia

Inspiration from positive findingswith the CADRES STUDY and

curiosity about some conflictingfindings

Chenoweth, L. King, M., Jeon, Y-H., Stein-Parbury, J.,Brodaty, H., Haas, M., Norman, R & Luscombe, G.2009 Caring for Aged Dementia Care Residentsstudy (CADRES): a cluster-randomised trial of Person-Centred Care in dementia.Lancet Neurology, 8 (4): 317-325.

Effect of PCC on Agitation (CMAI)29 symptoms/signs of agitation

Adjusted Model

30

35

40

45

50

55

60

CMAIhigher

is worse

DCM 49.9 47.9 46.5

PCC 49.5 43 38.6

UC 47 55.5 54.5

PRE POST FU

SE (means) ~ 5.2, CI +/- ~10

Full scale range: 29-203

Obs range: 29 – 119

P values

Tm’t x tm 0.0013

Time trends

PCC 0.0037

DCM 0.026

PCC Significant group by time interaction

Effect of PCC on Function and Psychiatric symptoms(NPI)

Significant improvement

Appetite & eating disorders, dis-inhibition, sleep quality (0.015)

Improvement

Delusions (p=0.04)

Anxiety (p=0.07)

Irritability/lability (p=0.09)

Elation/euphoria (p=0.02)

5

Cost-effectiveness of PCC in relation toagitation reduction at 8 month Follow-Up

Incremental Cost per site(relative to UC)

Incremental Outcomeper person(improvement inCMAI) (rel. to UC)

DCMapproach

PCC alone

10.9 18.4

$29,600

$17,700

Effect of PCC on Staff BehaviourSignificant improvement over time (0.001)

BUT NO SIGNIFICANTIMPROVEMENT IN RESIDENT

QUALITY OF LIFE

Further questions arising fromCADRES findings

1. Instruments- are they sufficientlysensitive for use in severe dementia?eg. QUAL-ID, NPI

2. PCC components need independentexamination, eg. care structures,contexts and practices

Constructs requiring further examination

Subjective experiences of the person with dementia

- clinical, social and psychological status, behavioural

responses to the psychosocial environment

Socio-cultural context of care situation

- care setting orientation, systems, policies, workforce,

leadership, care schedules and care environment

Interactional environment

- staff’s abilities, orientation, preparation and

demonstration of dementia care practice

The PerCEN studyPerson-centred environment and

care for residents with dementia. Acost effective way of improvingcare and resident well-being ?

Funding: NHMRC ($1.47m)

The PerCEN study team

InvestigatorsLynn Chenoweth, Ian Forbes, Jane Stein-Parbury-UTS/SESIAHSMadeleine King and Yun-Hee Jeon-USydRichard Fleming-UoWHenry Brodaty-UNSW/POWHMarion Haas and Richard Norman -UTS-CHEREAssociate InvestigatorsVictoria Traynor- UoWLaurel Hixon- UNSWShankar Sankaran-UTSStatisticiansGeorgina Luscombe-USyd, Patsy Kenny-UTS-CHEREResearch StudentsChanel Burke and Veronica Krakowzski (UTS), Ron Smith (UOW)Research AssistantsJanet Cook, Leonie Tinslay, Lesley Pope, Lynn Silverstone, Fiona Tait

To determine:1. the effect of person-centred care (PCC) on the quality of life(QOL) of aged care residents with dementia;2. the effect of modifying the dementia care environment

(person-centred environment (PCE) on the QOL of aged careresidents with dementia;

3. the combined effect of PCC and PCE on resident QOL;4. the effect of PCC on quality of care for aged care residents with

dementia5. the effect of PCE on quality of care6. the combined effect of PCC and PCE on quality of care7. cost-benefits of PCC and PCE in relation to resident QoL

PerCEN Study Aims

PerCEN study Design

Pre/post/follow-up, 3 year randomised,blinded, cluster control design.

Four intervention arms (PCC, PCE, PCC+PCE,UC+UE) randomly allocated to 39 residentialdementia care units which had room forimprovement in care systems, care practicesand care environments.

ResearchResearchLocationsLocations

NewcastleSydneyWollongong

UrbanRegionalRural

15

Residential High Care Dementia Units SAMPLE(n=39)

– located in urban & rural NSW Sydney, Australia

– providing high-care residential services to persons withdementia

– funded by the Australian Government and user co-contributions

– accredited (last 12 months) by the Australian ResidentialCare Accreditation Agency

– similar management structures, staffing ratios & staffmix

– similar service provision - nursing care, therapy &recreation programs

– serviced by GPs & other specialist health staff

Dementia care unit inclusion screen

Person-Centred Environment and Care Assessment Tool(PCECAT) (Burke et al, 2010) was used to assess ‘room forimprovement’ in service structure and culture, care quality andcare environment quality

PCECAT scores were converted to RFI scores, for each item

PCECAT SCORES ==> Room For Improvement (RFI) scores

0 = Not even considered ==> 3 = a lot of room for improvement1= Have thought about ==> 2 = quite a bit of room for improvement2 = Sometimes used ==> 1 = some room for improvement3 = Used a great deal ==> 0 = no room for improvement4 = Fully implemented ==> 0 = no room for improvement

Room for Improvement in CARE scores (min 0, max 31)n= 89 dementia care units

Room for Improvement in ENVIRONMENT scores (min 0,max 28) n=89 dementia care units

19

Resident sample (n=602)

Eligibility criteria– Consented-self and/or proxy– residential aged care permanent placement– medical diagnosis/record of dementia– 60+ years– classified as requiring High Care services with the Aged

Care Funding Instrument in 13 areas of cognitive,physical and psychosocial functioning

Exclusion criteria– serious co-morbidities, precluding engagement in normal

daily activities and social life of the care unit (eg. cardiacor respiratory failure, end-stage illness, unremittingpain/distressing physical symptoms)

– Unstable/ florid mental illness– Non-consent

Resident Measurement

Baseline

• Demographics, clinical information incl. drug/alcohol history,

co-morbidities, all prescribed and over counter medicines

• Aged Care Funding Instrument (ACFI) 13 Activities of Daily Living

category scores, including cognition, continence, behaviour and

depression (Department of Health & Aged Care 2006)

• Global Deterioration Scale in dementia (GDS) (Reisberg 2000)

Resident Measurement

Outcomes• Cohen-Mansfield Agitation Inventory (CMAI)-Long

Form (Cohen-Mansfield & Billig 1986)• Dementia Quality of Life (DEMQOL) and DEMQOL-

Proxy (Smith et al. 2005).• Cornell Scale for Depression in Dementia (CSDD)

(Alexopoulos et al. 1988)• Emotional Responses in Care (ERIC) (Fleming at al.

2009)• Accidents & injuries & hospital admissions related to

BPSDs• Psychotropic medicine use-frequency and dose

Care practices Measurement

Staff Knowledge and skill- Approaches to Dementia Questionnaire(ADQ) (Lintern, & Woods, 1996)

Care qualityQuality of Interactions Schedule (QUIS)(Dean, Proudfoot & Lindesay 1993)

Recreation activity-type and frequency per weekPhysical restraint type, frequency and length of time employed

Person-Centred Care (PCC) practicesPCC Dose and Duration scoresPCC Champion Resident Care Planning/Outcome reportsManager, Staff and Family visitor Interview Reports

Care Environment Measurement

Environment quality

Environmental Assessment Tool (EAT) (Fleming, Forbes &Bennett 2005)

Person-Centred Environment ApplicationCare Manager and Staff Interview ReportsFamily visitor Interview ReportsPCE Dose and Duration scores

Person-Centred Care Study Intervention

Staff education/training in 10 randomly allocated sites after baseline datacollected

5 full day PCC off-site interactive group education by PCC experts for 4-5PCC Champions (RNs, AINs, RAO)

10 -20 hours of on-site PCC training for PCC Champions per site over threemonths

Assistance and guidance in PCC assessment and care planning for residentswith need-driven behaviour on-site

Education and training based on Kitwood ‘s (1997 principlesand approaches.

Loveday, B., Bowe, B. and Kitwood, T. 1988“Improving Dementia Care: A Resource for Training andProfessional Development.” Bradford Dementia Group.

Person-Centred Environment Intervention

• Assessment of environment’s ability to meet the following needs indementia (EAT and SEAT instruments):

Sense of safety & security in living spaces

Feeling comfortable and familiar

Providing for closeness and privacy with trusted others

Free from frightening and unknown stimulation

Abundant with interesting and recognisable stimulation

Accessible for wandering & exploring & personal interaction

Having access wider community happenings and people• Negotiation and approval to proceed with 1-2 recommended environment

improvements with Facility executive, board of governors, managers andstaff

• Opened up indoor and/or outdoor living space; added comfortable

furnishing; changed wall/door colours; improved room design; added

cues for way-finding; outdoor shading, chairs and areas of interest

Data Analysis procedures

Three assessment pointsPre, post (10 months), Follow-up (18 months)

Project staff and investigators BLINDED to intervention

DescriptiveChi-square tests – categorical variables at baselineOne way ANOVA - continuous variables

Hierarchical regression modelsPre-test Outcomes – covariates, adjusting for baseline group variationsPredicted total sample mean and 95% confidence interval calculated for each

outcomeRandom Intercept - blocked by RACF nested in Intervention GroupsEstimation – Restricted Maximum LikelihoodLikelihood Ratio Tests - inclusion of random effectsAccounted for clustering within facility and adjusted for pre-test level of

dependent variable

Potential resident covariates measured at baseline

Age, gender, length of stay, psychiatric history, alcohol history,GDS (cognition), CSDD (depression) in CMAI (behaviour) andDEMQOL (quality of life) models.

Significant Covariates identified

CSDD and CMAI (CSDD retained in CMAI model)

Pre-intervention level-statistically significant in each model(p<0.0001)

Available data –Pre-test to Follow-up

DCUs 39 (pre), 36 (post), 36 (follow-up)

Residents 601 (pre), 416 (post), 296 (follow-up)

PCC 37% lost PCE 32% lost PCC+PCE 21% lost UC+UE 32% lost

No difference in CMAI, CSDD and DEMQOL-Proxy scores forresidents lost to follow-up

Costs to be considered against improvements in mainresident outcomes

• Education, training and supervision in PCC• Care and management staff time spent implementing PCC• Assessment, planning and approval procedures for PCE• Material cost and contractors time spent implementing PCE• Psychiatric assessments or consultations for behaviour• Resident Incidents (including any flow-on direct costs of

medical care due to incidents leading to injury, e.g. falls)• Staff Incidents, Sick Leave, and staff turnover (e.g.

recruitment costs, additional cost of locum care staff)• Hospitalisations (only those due to physical injuries attributed

to dementia-related behaviour)

Economic analysis plan

STUDY FINDINGS

Main ResidentOutcomes

Significant reductions in CMAI scores with time

UC/UEn=95

PCCN=98

PCEN=105

PCC+PCEN=118

p

CMAI

Pre mean(SD)

47.4(18.0)

67.1(25.7)

63.0(25.7)

55.3(17.0)

<0.0001

Post meanchange(SD)

1.8(27.7)

-11.8(27.6)

-11.1(21.9)

1.1(28.5)

<0.0001

% decrease 51 70 65 51

Significant reductions in CSDD scores with time

UC/UEn=95

PCCN=98

PCEN=105

PCC+PCEN=118

p

CSDD

Pre (SD) 8.9 (6.4) 12.0 (6.6) 9.7 (5.5) 9.4 (5.9) 0.002

Post meanchange(SD)

1.1(6.7)

-1.2(8.5)

-1.3(6.7)

0.9(8.5)

0.04

% decrease 40 48 58 47

Increases in DEMQOL scores (QoL) with time

UC/UEn=95

PCCN=98

PCEN=105

PCC+PCEN=118

p

DEMQoLPre av. score(1-4)

n= 35

3.10

n= 20

3.15

n=21

3.22

n=26

3.32

Post av score(1-4)

3.00 3.32 3.20 3.23

DEMQoLProxy

n=95 n=98 n=105 n=118

Pre mean (SD)range 32-128

100.7(12.3)

97.6(12.7)

101.0(10.8)

101.1(11.8)

0.12

Post meanchange (SD)

-2.65(16.6)

4.4(11.2)

-0.5(13.7)

2.0(11.6)

0.002

% Increase 47 62 48 55

Post-test Adjusted mean scores CMAI, DEMQoL Proxy, CSDDnon-significant improvements (p=0.005)

UC/UEn=95

PCCn=98

PCEn=105

PCC+PCE p

CMAI

Mean 50.34 54.32 50.29 57.65 0.72

DEMQoLProxy

Mean 98.5 102.37 100.36 102.78 0.40

CSDD

Mean 10.09 10.97 8.27 10.54 0.66

Main Resident Findings

Pre-Test

CMAI and CSDD –significant group differences

Post-test -unadjusted

CMAI, CSDD, DEMQoL proxy – significant groupimprovements for PCC and PCE

Post-test Adjusted

CMAI, CSDD, DEMQoL proxy – non significantgroup improvements for PCC, PCE, PCC+PCE

Additional Resident Findings

Cognition(GDS) decreased significantly

Functional ability (ACFI-ADL) improved for PCC,PCE and PCC+PCE sites

Prescription medicines for all illnesses -very high

(av. 15)- no changes

Accidents/injuries/treatments/hospitalisationrelating to behaviour – very low- no changes

Emotional responses to care (ERIC) positiveimprovements for PCC, PCE and PCC+PCE sites

Duration and Strength of feelings

0

1

2

3

4

5

Pleasure Score

Pleasure Strength

Affection Score

Affection Strength

Helpfulness Score

Helpfulness Strength

No Response ScoreAnger Score

Anger Strength

Anxiety Score

Anxiety Strength

Pain Score

Pain Strength

Emotional Response

0%

20%

40%

60%

80%

100%

Pre Test

Positive

Pre Test

Negative

Post Test

Positive

Post Test

Negative

Follow Up

Positive

Follow Up

Negative

Pe

rce

nta

ge UC/UE

PCC

PCE

PCC/PCE

Care quality findings

PCC dose and duration scores - wide range (32-92)(2 RACFs did not proceed with PCC)

PCC implemented for approx. 10 residents in eachRACF

Restraint verbal and physical – very low Recreation activities - No change Quality of care interactions (QUIS) improved for PCE

sites and PCC+PCE sites Non-engaged (neutral) staff -to-resident interactions

(QUIS) reduced

Care Quality

0%

20%

40%

60%

80%

100%

Pre Test

Positive

Pre Test

Negative

Post Test

Positive

Post Test

Negative

Follow Up

Positive

Follow Up

Negative

Pe

rce

nta

ge UC/UE

PCC

PCE

PCC/PCE

Care Environment Findings

PCE dose and duration scores- wide range

(0-90) (5 RACFs did not implement PCE)

Environment quality (EAT) improved overtime

Residents use of environment improvedover time (Manager, staff, visitorinterviews)

Data Analyses in process

• Interviews with care managers, direct carestaff, PCC Champions, family visitors

• PCECAT scores for organisational culture andstructures that best support PCC and PCE

• Staff outcome data

• Cost analyses of PCC and PCE inputs againstresident outcomes

• Research field notes - reflections of caremanager, staff and resident interactions,cooperation and mood of the DCU

Lessons learnt from PerCEN

Effectiveness – for PCC and PCE to be taken up weneed to convince executive, managers and staff ofits potential value for them, the organisation andthe residents.

Feasibility – PCC and PCE must be acceptable andable to be implemented by addressingresident/family preferences, staff skills andexperience, resource availability. PCE needsadequate time to be approved and implemented.

Applicability – PCC and PCE must be suitable forpartIcular cultural contexts, need to be adaptedfor the setting, circumstances, leadershipcapabilities and levels of executive support.

Successful research evidence influence strategy

Vision Skills Incentives Action PlanResources = CHANGE+ + + +

Skills Incentives Action PlanResources = CONFUSION+ + +

Vision Incentives Action PlanResources = ANXIETY+ + +

Vision Skills Action PlanResources = RESISTANCE+ + +

Vision Skills Incentives Action Plan = FRUSTRATION+ + +

Vision Skills Incentives Resources = TREADMILL+ + +

(Knoster, T. (1991) Presentation at TASH Conference, Washington, D.C.)

PerCEN Study Protocolpublication

Chenoweth, L., King, M., Stein-Parbury., Jeon, Y-H.,Brodaty, H., Haas, M., Forbes, I., Fleming, R.,Luscombe, G. 2010 Study protocol of a RandomisedControlled Group Trial of client and care outcomesin the residential dementia care setting.

Worldviews on Evidence-Based Nursing.

DOI: 10.1111/j.1741-6787.2010.00204.x