TY - JOUR

T1 - Challenge Demcare: management of challenging behaviour in dementia at home and in care homes – development, evaluation and implementation of an online individualised intervention for care homes; and a cohort study of specialist community mental health care for families

AU - Moniz-Cook, Esme

AU - Hart, Cathryn

AU - Woods, Robert

AU - Whitaker, Chris

AU - James, Ian

AU - Russell, Ian

AU - Edwards, Rhiannon

AU - Hilton, Andrea

AU - Orrell, Martin

AU - Campion, Peter

AU - Stokes, Graham

AU - Jones, Robert

AU - Bird, Michael

AU - Poland, Fiona

AU - Manthorpe, Jill

N1 - This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme © Queen’s Printer and Controller of HMSO 2017. This work was produced by Moniz-Cook et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

PY - 2017/8

Y1 - 2017/8

N2 - Dementia brings behavioural changes in a person that families and staff in care homes can find challenging. Causes of these ‘challenging behaviours’ (CBs) are complex and not always attributable to the dementia condition itself. Simple responses, such as ‘reasoning’ with the person or giving ‘calming’ drugs, have limited use. Instead, a skilled ‘detective-like’ approach to understand the sometimes hidden need(s) of each person with dementia is required.We developed an online system with comprehensive training and individually tailored care plans to assist care home staff and community practitioners to use this detective-like approach to find solutions for common CBs.This was tested for people with dementia and significant CBs in care homes. The intervention was not effective in reducing CBs, compared with those who did not receive it. Care staff did not readily access worksite-based online training, despite significant provision for back-fill time and information technology resources. Off-worksite training facilitated by an experienced dementia practitioner, with opportunity for discussion and practice in tailoring care plans, received positive feedback.The intervention with home-dwelling people with dementia and CBs was not tested because of insufficient referrals. An observational study was conducted in home-dwelling people with dementia and CB. Over 60% of these had mild dementia. An average of nine clinical contacts over 6 months did not have an overall impact on CB. The changing landscape of NHS practices may have undermined timely responses to dementia with CB. Furthermore, families found it hard to know when they were deserving of specialist support from the NHS. Families bear the majority of the care costs for dementia with CB. A care gap in the delivery of post-diagnostic help for families supporting relatives with dementia and significant CB at home has emerged.Our evidence suggests that priorities for a skilled NHS-led dementia workforce should shift from early diagnosis to early recognition and clinical support of family and staff carers who are challenged by dementia-related behaviours. Our programme has produced clinical protocols and resources for the recognition of significant CBs and manualised guidance for practitioners to deliver interventions. These require dissemination and further evaluation.

AB - Dementia brings behavioural changes in a person that families and staff in care homes can find challenging. Causes of these ‘challenging behaviours’ (CBs) are complex and not always attributable to the dementia condition itself. Simple responses, such as ‘reasoning’ with the person or giving ‘calming’ drugs, have limited use. Instead, a skilled ‘detective-like’ approach to understand the sometimes hidden need(s) of each person with dementia is required.We developed an online system with comprehensive training and individually tailored care plans to assist care home staff and community practitioners to use this detective-like approach to find solutions for common CBs.This was tested for people with dementia and significant CBs in care homes. The intervention was not effective in reducing CBs, compared with those who did not receive it. Care staff did not readily access worksite-based online training, despite significant provision for back-fill time and information technology resources. Off-worksite training facilitated by an experienced dementia practitioner, with opportunity for discussion and practice in tailoring care plans, received positive feedback.The intervention with home-dwelling people with dementia and CBs was not tested because of insufficient referrals. An observational study was conducted in home-dwelling people with dementia and CB. Over 60% of these had mild dementia. An average of nine clinical contacts over 6 months did not have an overall impact on CB. The changing landscape of NHS practices may have undermined timely responses to dementia with CB. Furthermore, families found it hard to know when they were deserving of specialist support from the NHS. Families bear the majority of the care costs for dementia with CB. A care gap in the delivery of post-diagnostic help for families supporting relatives with dementia and significant CB at home has emerged.Our evidence suggests that priorities for a skilled NHS-led dementia workforce should shift from early diagnosis to early recognition and clinical support of family and staff carers who are challenged by dementia-related behaviours. Our programme has produced clinical protocols and resources for the recognition of significant CBs and manualised guidance for practitioners to deliver interventions. These require dissemination and further evaluation.

U2 - 10.3310/pgfar05150

DO - 10.3310/pgfar05150

M3 - Article

VL - 5

JO - Programme Grants for Applied Research

JF - Programme Grants for Applied Research

SN - 2050-4322

IS - 15

ER -