The CAREDEM feasibility study 2011-13
Joint CIs: Iliffe (UCL) & Robinson (Newcastle University)
PIs: Robinson (North east), Livingston (London), Fox (Kent)
CTU: McColl (Newcastle University)
Economics: Knapp (LSE)
Service modelling: Coulson (Kent University)
Intervention development: Stephens (Dementia UK) &
Manthorpe (KCL)
Qualitative studies: Britain & Bond (Newcastle University)
Funder: HTA programme (08/53/99)
Sponsor: UCL
The problems
These problems…
• Fragmented care for people with dementia
• General practice underperforming
• Ageing population, rising prevalence of dementia
• Reduced expenditure on NHS
Suggest that we need…
• Skill transfer & smarter working
For which there is precedent….
• US case management studies have shown benefits for
people with dementia
A solution? Case Management
• Coordinated health and social care at group general
practice level
• Done by a single, experienced health or social care
professional already in post
• Working to a protocol (agreed procedures)
• For people with dementia and those supporting them in all
settings
Precedent: The US ‘Prevent’ trial
CAREDEM’s Aims and Objectives
Aim: To evaluate the effectiveness and cost effectiveness of
Collaborative cARE for people with DEMentia in primary care
(Collaborative care = ‘Case Management’)
Objectives:
1)To develop and pilot the feasibility of a UK model of case
management for dementia in primary care.
2) To provide a detailed description and analysis of the case
management intervention, including a description of how it works in
practice, and a toolkit for its replication.
3) To explore the acceptability and value of case management in
dementia, to people with dementia, their family carers and other
dementia care professionals and services.
Study design: two work packages
• Work package 1: Developing the intervention and
customising care pathways from the PREVENT
study, using co-design methods
• Work package 2: Pilot (feasibility) study with a
qualitative component
• Preparation for a full-scale definitive trial,
depending on WP 1 & 2
Work package 1
• Assemble multi-disciplinary Design team, with PPI [Codesign] – with Kent PCT/CLRN/CMHT/Council
• Iterative development of prototype educational package
[‘Bench testing’]
• Critique of the prototype by a separate Review team
including PPI [technology development approach]
• Job description, person specification, educational needs
assessment, learner’s manual, training & mentoring
process (dedicated tutor)
Work package 2
• Feasibility trial, 4 practices (Norfolk, London,
Newcastle x 2)
• Rehearsal pilot study, 11 people with dementia
per practice (total = 44 dyads)
• Objective : to ensure that case management skills
are easy to acquire and apply
• 2 practice nurses (1.2 a day/week), 1 attached
Social Worker (full time for 2 practices)
• ‘soft technology’ or ‘shoe-horning’?
WP2 eligibility
Inclusion criteria :
1) having a dementia diagnosis confirmed by
specialist services;
2) having a carer;
3) not being resident in a care home;
4) not having regular reviews by specialist services.
WP2 Outcomes
People with dementia identified from
QOF searches (n =276)
In care homes (n =138)
Number assessed for eligibility (n
=138)
Excluded (n =110 )


Number recruited (28 patients & 29
carers)
Receiving palliative care (n = 4)
No carer or carer uncontactable
(n=24)

Unavailable or unable to contact
(n=18)

Already case managed (n=4)

Other, including practice reasons
(n=43)
Declined to participate (n =17)
Findings 1
None of the four practices achieved recruitment target of 11 dyads
Only one practice achieved a level of case management activity that
would be likely to have an effect on outcomes for people with dementia or
their carers
Barriers to effective case management:
• Erosion of case manager time by other clinical tasks in practices
where nurses fulfilled the role;
• Difficulties in identifying and acting on ‘low level’ unmet needs;
• Lack of clarity over case management role;
• Poor integration with local services;
• Difficult to embed CM in primary care team (social work attachment).
Conclusions
• The model of practice-based case management developed
and tested in this study would be difficult to implement in
the NHS at present
• It would be inappropriate to proceed to an RCT
• Further work on models of case management is needed.
• PWD being reviewed by specialist services may benefit
from case management
• PWD resident in care homes may benefit from case
managment
Thank you for listening
This study has received financial support from the
Department of Health National Institute for Health
Research (DH/NIHR) Programme Grants for
Applied Research funding scheme.
The views and opinions expressed here do not
necessarily reflect those of the Department of
Health or the NIHR.