· Separate service pathways for families and care homes, with skilled workforces for each of these, may enhance the efficiency of delivery of interventions for carers facing clinically significant challenges in dementia.
The findings from a large-scale programme on the Management of Dementia with clinically significant challenging behaviour at home and in care homes led by the University of Hull and Humber NHS FT is published today (August 11 2017). The research was funded by the National Institute for Health Research (NIHR), Programme Grants for Applied Research (PGfAR).
Over 5300 home-dwelling people and their families referred for specialist help were screened across England, and 61% of those with dementia and clinically significant challenging behaviour had a mild dementia. Practitioners did not always recognise what constituted clinically significant challenging behaviour in dementia; and over a six month period, they did not manage to reduce the challenges faced by these families. Families bore most of the care costs of dementia with challenging behaviour, and many were unaware of the evidence, guidelines and scope for trained therapists to support them with timely individually-tailored effective responses to their challenging circumstances.
Over 2300 residents living in 63 care homes which were rated as ‘good’ or ‘excellent’ on the then CQC website across Hull, the East Riding of Yorkshire and York were screened for clinically significant challenging behaviour. A trial of e-learning and online therapist-assisted intervention involved 832 residents and 632 care staff. Despite offering high levels of IT support and resources from a trained dementia therapist, the care home industry in this part of North East England was on the whole not ready to embrace online training with individually tailored interventions. However smaller homes with less hierarchical management were more ready to engage in innovation to improve the care of people with dementia and challenging behaviour, including uptake of e-learning opportunities. Using an in-depth qualitative process evaluation, a tool-kit has been developed for specialist care home liaison teams to assess the readiness of a care home to collaborate with health and psychosocial interventions for clinically significant challenging behaviour in dementia, and to assist care homes who have real practical difficulties in delivering collaborative specialist interventions. This evidence based e-learning and individualised intervention is appropriate for the training and support of specialist care home liaison teams and hospital staff .
These in-depth studies of people with dementia and challenging behaviours living at home or in care homes, also noted that prescribing practices were sub-optimal.
Professor Esme Moniz-Cook who led the research, with Professor (now Emeritus) Peter Campion and Drs Ivana Markova and Andrea Hilton at the University Hull; and with Cathryn Hart (now Assistant Director of R&D) and Angie Mason (Nurse Director - now retired) Humber NHS FT who sponsored this programme, said:
‘Older people with dementia in the early stages of the condition can have clinically significant distressed behaviours, and they and their families can remain undetected until it is too late to provide effective interventions for them at home. Our programme of work has developed simple but valid screening tools to capture the currently undetected clinically significant challenges in both family care and care homes. These can be used by stakeholder providers across primary and secondary care, to detect clinically significant challenging behaviour and monitor the effect of support programmes over time. We have also developed evidence-based e-learning and tool-kits to be translated for dissemination amongst stakeholder providers who are commissioned to provide services such as care homes dedicated to challenging behaviour in dementia care or care home liaison teams; and workforce training for staff in hospitals and teams dedicated to serve families who support home-dwelling people with dementia and distressed behaviour.
The majority of older people with dementia live at home and those with distressed behaviours and their families are the most vulnerable of this group. Our aspiration is to disseminate work from this programme and support commissioners and stakeholder providers across Hull and the East Riding of Yorkshire and beyond. The first step is to facilitate the balance of primary, secondary and hospital practice from early diagnosis of dementia, to early recognition of challenging behaviour within two focussed pathways for post-diagnostic dementia care, and to train practitioners in timely evidence-based health and psychosocial tailored practices within each of these pathways.’
Key Collaborators included the universities of Bangor (Wales), Kings College London, East Anglia (UEA), Swansea (Wales), Nottingham and Bradford; and Northumberland Tyne and Wear NHS FT and BUPA. This summary has been prepared by the Chief Investigator and does not necessarily reflect views or opinions of the NIHR, collaborating institutions, the NHS or the Department of Health
Contact: Professor Esme Moniz-Cook