Support at Home: Interventions toEnhance Life in Dementia (SHIELD)

5 Year Research Programme

Funded by the National Institute ofHealth Research

Professor Martin Orrell

Support at Home: Interventions toEnhance Life in Dementia (SHIELD)

5 Year Research Programme

Funded by the National Institute ofHealth Research

Professor Martin Orrell

Why?Why?

• Number of older people with dementia in the UK

2008: Over 600,000

2026: 840,000

2050: 1.2 million

• Role of drug treatments and limitations

• Value of psychosocial interventions

• Increasingly emphasis on maintaining PWD athome

Why?Why?

Impact of dementia in social health careservices and family carers

National Service Framework :”Treatment indementia always needs to include nonpharmacological management strategies”

National strategy for carers published in1999 from the DoH have remained a highpriority.

Why?Why?

Need to identify useful and effectiveinterventions to reduce the social andeconomic impact of dementia andreduce its impact on PWD, carers andsociety.

Aim:Aim:

To provide essential evidence to clarify therole of each of the interventions in:

. Helping to support people at home

. Reducing hospital admissions

. Improving quality of life of peoplewith dementia and carers

SHIELDSHIELD

Maintenance CST - improve cognition and quality oflife of people with dementia

Reminiscence groups - for pwd/carers maintain qualityof life and improve relationships

Expert carer programme - trains ex-carers to help newcarers of people with dementia

Home treatment package - manage crises at home, andprevent admission to hospital for people with dementia.

Training manuals to help other services implement thesame approaches.

Cognitive Stimulation TherapyCognitive Stimulation TherapyPrevious studiesPrevious studies

2 RCT found that over 6 months CSand CI in combination more effectivethan CI alone

RCT (Spector et al, 2003)

7 Week evidence based CST

201 People recruited

23 day centres (5) and care homes (18)

Greater London

Cognitive Stimulation TherapyCognitive Stimulation TherapyPrevious studiesPrevious studies

MCST Pilot study (Orrell et al, 2005) Twice a week for 7 weeks Once a week for extra 16 weeks 2 care homes treatment / 2 care homes control

group

Found significant improvement in cognitive function

WhatWhat wewe knowknow

Beneficial for QoL and Cognition

Cost effective

Benefit similar to cholinesterase inhibitors

Longer term MCST, significantimprovement in cognition over time

1.9 improvement on MMSE (EG)

0.7 decline on MMSE (CG)

What we do not knowWhat we do not know

MCST Effects on a larger RCT

MCST impact on care homes admissions

Effectiveness of training

CST practise evidence

Different training models effects

What weWhat we’’ll doll do

Systematic literature review and metaanalysis

Development of a MCST training package

Piloting the package with 4 MCST groups

Multicentre RCT of MCST vs. CST

CST/MCSTCST/MCST

Develop a training package based on theprevious CST manual for MCST

Check package with 4 MCST groupsdeveloping reliable measure of adherence tocompetence

Multicentre RCT of MCST vs. CST

RCTRCTCST/MCSTCST/MCST

230 people with dementia

=> 60/230 Alzheimer's type + Donezepil

Ran CST Groups

5 to 8 per group

Twice a week

45 mins per session

7 Weeks

RandomisedRandomised

Control Group- 26 Weeks TAU

Experimental Group- 26 Weeks MCST

Once a Week45 Mins

AlzheimersAlzheimers++

DonezepilDonezepil

Dementia other typeDementia other type++

AlzheimersAlzheimersunsuitableunsuitableDonezepilDonezepil

People with dementia meetinginclusion criteria for CST groups.Screened and entered into CST groupsSubtype of dementia identified

Alzheimers disease plus(1) currently on cholinesteraseinhibitors (CHEIs) OR(2) willing and suitable forcholinesterase inhibitors

1) Non Alzheimers dementia OR2) Alzheimers but unwilling orunsuitable to take cholinesteraseinhibitors.

IF (2) Contact local clinicalteam suggest suitability forCHEIs

IF (1)ContinuewithCHEIs

Commence CST groups

clinicalteam startsCHEIs

clinical teamdoes not startCHEIs

CST groups finish

Randomisation to eitherMCST plus CHEIs OR control plus CHEIs

Randomisation to eitherMCST OR control groups

Comparison Two trainingComparison Two trainingpackagespackages

Manual

Workbook

DVD

Manual

Workbook

DVD

1 Day TrainingSeminar

Monthly follow upsupport group for sixmonths

Analysis of the trainingAnalysis of the training

Measure the impact of the training approach onadherence to the training and competence .

Impact of the two trainings in staff factors

Therapist competency and adherence to themanual using 60 videos of randomly selectedsessions (SRP)

Post-RCT surveillance and monitoring study ofMCST in practice.

ReminiscenceReminiscence

Taps into early memories and encouragescommunication and well being

Evidence showing that including carers andpeople with dementia is more effective thanonly carers

Trial platform has developed a manual forjoint reminiscence indicating that improvescaring relationships and benefits both

Previous studies evidencePrevious studies evidenceRYCTRYCT

What we knowWhat we know

A previous study successfully developed a manual for jointreminiscence (RYCT) and suggests that RYCT improvesthe caring relationship and benefited both

- PWD had better autobiographical memory post treatmentbut not at follow up- Caregivers from YRCT perceived their relatives lesscritical- Carers after treatment groups showed reported lessdepression.

RYCTRYCT

10/12 Pairs of Person with dementia andcarers

Weekly Meeting for 3 months

Monthly meeting for 9 months

300 people in total => 250

15 RYCT/ 15 CG

Expert Carer ProgrammeExpert Carer Programme

To train ex carers to be expert carers

Evidence from previous studies (BECCA)showing that ex carers are motivated to supportothers at an earlier stage I their role as a familycarer through mentoring and teaching.

65% befrienders were ex carers

Feedback from BECCA groups found befrienderswould have preferred and expandable role.

What weWhat we’’ll doll do

Systematic Review on psychosocial approachesfor carers

Consultation with voluntary organisations, carers

Focus groups

Scoping exercise including professionals

Consensus conference including stakeholders

Develop an Expert Carer Programme for ex carers

Expert Carer ProgrammeExpert Carer Programme

Mentoring

Training

CB

Stress Management

Behavioural Management

Delivery to ex carers betweenvoluntary/health organisations

Expert Carer Programme: ECPExpert Carer Programme: ECP25 Expert Carers25 Expert Carers

6 sessions (2 hour each) Selection of specific BECCA Modules adapted to

the needs of ex carers Modules:

Listening SkillsCoping SkillsProblem Solving

DVD/Manual/Protocol/Diary Training plus support/ Diary Review fortnightly

Expert Carer Mentoring RoleExpert Carer Mentoring Role

Fortnightly 2 hour support

Coaching visits for 3 months including thecourse

Monthly support group run by expert carerfor 9 months

Training for new carers: 4 Half DaySessions

What weWhat we’’ll doll do

Recruiting and training care workers in RYCT

Exploratory trial

- Feasibility RYCT plus ECP

- Including the RYCT trial components andECP

RCT, four arms, multicentre (5 Centres),randomised (random allocation) controlled (stableconditions) trial (stimulus-reaction)

Randomised Control TrialRandomised Control Trial

Total of 80 PWD/ 80 Carers 20 in each group

Measures: Baseline/ 3 Months/ 6 Months- QOL-AD-GHQ-28- Caregiver Mental Health

RYCT ECP UC

RYCT

Plus ECP

Intensive Home SupportIntensive Home Support

• to help manage crisis at home and reducehospital admissions

• Previous research have found that 97% of socialservices departments aimed to providedcommunity services but only 20 had intensivecare management.

What weWhat we’’ll doll do

Systematic review of the literature , looking atcare management and crisis resolution approachesaimed at maintaining PWD at home

Develop a HTP including:- Professionals- Academics- Care Workers- Voluntary Sectors- Carers- PWD

HTPHTP

Literature review will be summarised

Scoping exercise including:

- Focus Groups

- Nominal Groups

- Postal Consultation

- Consensus Conference (including subgroupsworking through a range of high risk caseexamples using a draft of the HTP to articulatebest care practices and responses).

Function of HTPFunction of HTP

Advisory protocol/ care pathway includinga risk assessment/ care planning tool

Development of a manual based on theCANE

Development of a training package

Survey 100 psychiatricSurvey 100 psychiatricadmissionsadmissions

Across 4 main study sites (NELMHT, Hull,Manchester, Reading)

Identify:

- Range of admissions

- Number of reasons for admissions

- Possible alternatives for admissions

- Time of admissions

Depth analysis of cases and multidisciplinaryexpert panel

What weWhat we’’ll doll do

Field testing of 100 people with dementiaidentify as being at risk

Development of a revised HTP

Exploratory trial in CMHT in four centrescomparing HTP with TAU for 160 peoplewith dementia.

National multicentre RCT of HTP indementia.

RCT HTO vs. UCRCT HTO vs. UC

Multicentre (4 main sites) Referred for home treatment because of high/very

high risk of requiring institutional/ hospitaladmission

Measures at 3/6/12 months Measures:

• CANE• Number of psychiatric/ hospital admissions• Number of Inpatient bed days• QoL -AD

SHIELD Research questionsSHIELD Research questions

• How can we make services more clinicallyeffective/efficient?

• What is the best way to support communityservices/reduce admissions?

• What will work best for patients/carers andreferrers?

• How can we improve quality of life andsatisfaction and reduce unmet needs?