Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM)

Abstract

BackgroundThe needs of people with dementia and their carers are inadequately addressed at all key points in the illness trajectory, from diagnosis through to end-of-life care. The EVIDEM (Evidence-based Interventions in Dementia) research and development programme (2007–12) was designed to help change this situation within real-life settings.ObjectivesThe EVIDEM projects were (1) evaluation of an educational package designed to enhance general practitioners’ (GPs’) diagnostic and management skills; (2) evaluation of exercise as therapy for behavioural and psychological symptoms of dementia (BPSD); (3) development of a toolkit for managing incontinence in people with dementia living at home; (4) development of a toolkit for palliative care for people with dementia; and (5) development of practice guidance on the use of the Mental Capacity Act (MCA) 2005.DesignMixed quantitative and qualitative methods from case studies to large database analyses, including longitudinal surveys, randomised controlled trials and research register development, with patient and public involvement built into all projects.SettingGeneral practices, community services, third-sector organisations and care homes in the area of the North Thames Dementia and Neurodegenerative Diseases Research Network local research network.ParticipantsPeople with dementia, their family and professional carers, GPs and community mental health team members, staff in local authority social services and third-sector bodies, and care home staff.Main outcome measuresDementia management reviews and case identification in general practice; changes in behavioural and psychological symptoms measured with the Neuropsychiatric Inventory (NPI); extent and impact of incontinence in community-dwelling people with dementia; mapping of pathways to death of people with dementia in care homes, and testing of a model of collaborative working between primary care and care homes; and understandings of the MCA 2005 among practitioners working with people with dementia.ResultsAn educational intervention in general practice did not alter management or case identification. Exercise as a therapy for BPSD did not reduce NPI scores significantly, but had a significant positive effect on carer burden. Incontinence is twice as common in community-dwelling people with dementia than their peers, and is a hidden taboo within a stigma. Distinct trajectories of dying were identified (anticipated, unexpected and uncertain), and collaboration between NHS primary care and care homes was improved, with cost savings. The MCA 2005 legislation provided a useful working framework for practitioners working with people with dementia.ConclusionsA tailored educational intervention for general practice does not change practice, even when incentives, policy pressure and consumer demand create a favourable environment for change; exercise has potential as a therapy for BPSD and deserves further investigation; incontinence is a common but unrecognised problem for people with dementia in the community; changes in relationships between care homes and general practice can be achieved, with benefits for people with dementia at the end of life and for the UK NHS; application of the MCA 2005 will continue to improve but educational reinforcements will help this. Increased research capacity in dementia in the community was achieved. This study suggests that further work is required to enhance clinical practice around dementia in general practice; investigate the apparent beneficial effect of physical activity on BPSD and carer well-being; develop case-finding methods for incontinence in people with dementia; optimise working relationships between NHS staff and care homes; and reinforce practitioner understanding of the MCA 2005.Trial registrationEVIDEM: ED-NCT00866099; EVIDEM: E-ISRCTN01423159.FundingThis project was funded by the Programme Grants for Applied Research programme of the National Institute for Health Research.

A systematic review of interventions to detect dementia or cognitive impairment

“…Four of the studies were RCTs, four used a non-randomised concurrent comparison group and five compared outcomes before and after the intervention. Most of the studies (n = 7) tested educational interventions (Barton et al, 2006;Boise et al, 2010;Borson et al, 2007;Downs et al, 2006;Iliffe et al, 2013;Pond et al, 1994;Rondeau et al, 2008). These were very heterogeneous (Table 4).…”

“…The third (Iliffe et al, 2013), which did not find a positive result, was not powered to detect differences in proportions diagnosed with dementia.…”

“…Primary outcomes were the following: dementia diagnosed by specialists using validated measures (six studies) (Banerjee et al, 2007;Boise et al, 2010;Luce et al, 2001;Pond et al, 1994;Ramakers and Verhey, 2011;Rondeau et al, 2008); a record of cognitive impairment or dementia diagnosis in participants' medical notes (six studies) (Barton et al, 2006;Borson et al, 2007;Chan et al, 2010;Downs et al, 2006;Iliffe et al, 2013;Perry et al, 2008); and the numbers of people presenting to their GP with memory complaints (one study) (Seabrooke and Milne, 2009). In addition, two studies (Barton et al, 2006;Luce et al, 2001) …”

“…There was no significant difference in mean diagnosis concordance scores, the primary outcome, which assessed dementia diagnosis reliability, before or after the intervention, indicating diagnostic accuracy did not change. Iliffe et al (2013) compared usual care to an educational intervention comprising an educational needs assessment, group workshops on dementia and computer support software, in an unblinded cluster RCT involving 23 practices. GP electronic notes were searched before and 12 months postintervention for dementia or suspected dementia diagnoses.…”

Meeting the needs of older people living at home with dementia who have problems with continence

“…EVIDEM-C was part of a programme of research into improving dementia care (Iliffe et al 2015) https://www.journalslibrary.nihr.ac.uk/pgfar/pgfar03030/#/s3 )…”