The CAREDEM feasibility study 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

CAREDEMs 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 [Co- design] – 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, learners 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 ) 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) Number recruited (28 patients & 29 carers)

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.