· 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
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