Dementia-related symptoms, sometimes termed challenging or distressing behaviour, can give rise to significant distress in care homes. Individualised formulation-led interventions show promise in reducing these behaviours. ResCare, a cluster randomised controlled trial in England, tested an online individualised intervention, comprising e-learning and decision support e-tools, designed to enable staff to better support residents with such symptoms. Normalisation process theory was used to understand the implementation processes. We analysed contextual process data for all 27 ‘intervention’ care homes and identified three implementation mechanisms. These were examined for four illustrative case study homes. Seven qualitative interviews with care home staff and one interview with two research therapists informed this understanding. The main barrier to implementation was difficulty in conveying a sustained understanding of the value of individually tailored interventions. Emphasis was placed on training rather than practice change. Implementation seemed easier in smaller homes and in those with flexible managerial styles where transfer of knowledge and skill might have been easier to achieve. Take up of e-learning and e-tools proved hard. There may be a need to continually promote ‘buy-in’ of the potential benefits of individualised formulation-led interventions, and this would have to be congruent with other priorities. Interventions within care homes need to consider organisational readiness, capacity for innovation and ongoing appraisal and adjustment to maintain changes in practice.
BackgroundDementia with challenging behaviour (CB) causes significant distress for caregivers and the person with dementia. It is associated with breakdown of care at home and disruption in care homes. Challenge Demcare aimed to assist care home staff and mental health practitioners who support families at home to respond effectively to CB.ObjectivesTo study the management of CB in care homes (ResCare) and in family care (FamCare). Following a conceptual overview, two systematic reviews and scrutiny of clinical guidelines, we (1) developed and tested a computerised intervention; (2) conducted a cluster randomised trial (CRT) of the intervention for dementia with CB in care homes; (3) conducted a process evaluation of implementation of the intervention; and (4) conducted a longitudinal observational cohort study of the management of people with dementia with CB living at home, and their carers.Review methodsCochrane review of randomised controlled trials; systematic meta-ethnographic review of quantitative and qualitative studies.DesignResCare – survey, CRT, process evaluation and stakeholder consultations. FamCare – survey, longitudinal cohort study, participatory development design process and stakeholder consultations. Comparative examination of baseline levels of CB in the ResCare trial and the FamCare study participants.SettingsResCare – 63 care homes in Yorkshire. FamCare – 33 community mental health teams for older people (CMHTsOP) in seven NHS organisations across England.ParticipantsResCare – 2386 residents and 861 staff screened for eligibility; 555 residents with dementia and CB; 277 ‘other’ residents; 632 care staff; and 92 staff champions. FamCare – every new referral (n = 5360) reviewed for eligibility; 157 patients with dementia and CB, with their carer; and 26 mental health practitioners. Stakeholder consultations – initial workshops with 83 practitioners and managers from participating organisations; and 70 additional stakeholders using eight group discussions and nine individual interviews.InterventionAn online application for case-specific action plans to reduce CB in dementia, consisting of e-learning and bespoke decision support care home and family care e-tools.Main outcome measuresResCare – survey with the Challenging Behaviour Scale; measurement of CB with the Neuropsychiatric Inventory (NPI) and medications taken from prescriptions; implementation with thematic views from participants and stakeholders. FamCare – case identification from all referrals to CMHTsOP; measurement of CB with the Revised Memory and Behaviour Problems Checklist and NPI; medications taken from prescriptions; and thematic views from stakeholders. Costs of care calculated for both settings. Comparison of the ResCare trial and FamCare study participants used the NPI, Clinical Dementia Rating and prescribed medications.ResultsResCare – training with group discussion and decision support for individualised interventions did not change practice enough to have an impact on CB in dementia. Worksite e-learning opportunities were not readily taken up by care home staff. Smaller homes with a less hierarchical management appear more ready than others to engage in innovation. FamCare – home-dwelling people with dementia and CB are referred to specialist NHS services, but treatment over 6 months, averaging nine contacts per family, had no overall impact on CB. Over 60% of people with CB had mild dementia. Families bear the majority of the care costs of 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. Higher levels of CB were recorded in family settings; and prescribing practices were suboptimal in both care home and family settings.LimitationsFunctionality of the software was unreliable, resulting in delays. This compromised the feasibility studies and undermined delivery of the intervention in care homes. A planned FamCare CRT could not proceed because of insufficient referrals.ConclusionsA Cochrane review of individualised functional analysis-based interventions suggests that these show promise, although delivery requires a trained dementia care workforce. Like many staff training interventions, our interactive e-learning course was well received by staff when delivered in groups with facilitated discussion. Our e-learning and decision support e-tool intervention in care homes, in its current form, without ongoing review of implementation of recommended action plans, is not effective at reducing CB when compared with usual care. This may also be true for staff training in general. A shift in priorities from early diagnosis to early recognition of dementia with clinically significant CB could bridge the emerging gap and inequities of care to families. Formalised service improvements in the NHS, to co-ordinate such interventions, may stimulate better opportunities for practice models and pathways. Separate services for care homes and family care may enhance the efficiency of delivery and the quality of research on implementation into routine care.Future workThere is scope for extending functional analysis-based interventions with communication and interaction training for carers. Our clinical workbooks, video material of real-life episodes of CB and process evaluation tool resources require further testing. There is an urgent need for evaluation of interventions for home-dwelling people with dementia with clinically significant CB, delivered by trained dementia practitioners. Realist evaluation designs may illuminate how the intervention might work, and for whom, within varying service contexts.Trial registrationCurrent Controlled Trials ISRCTN02553381 (the ResCare trial) and ISRCTN58876649 (the FamCare study).FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full inProgramme Grants for Applied Research; Vol. 5, No. 15. See the NIHR Journals Library website for further project information.
The Care Home Activity Project was a feasibility study examining the effect of occupational therapy on levels of depression and quality of life of residents in care homes. This paper describes the costs of the one year occupational therapy intervention, the use and cost of services received by the residents both before and after the intervention and compares these with the services received by a control group over the same period. Eight homes in northern England were included in the study with four homes receiving the services of a full-time occupational therapist, the remaining four acting as the control group. Services received by residents in both groups were recorded at the beginning and end of the one year study. The cost of the occupational therapy intervention was computed from published unit costs with adjustments for travel, equipment costs and methods of working. There was a significant increase in the likelihood of using social services in the intervention homes. This could be explained by previously unrecognised needs being revealed by the therapists. There may have been a reduction in health costs in the intervention group. At 2005 levels, the net cost of providing the occupational therapy service was pounds 16 (E 23) per resident per week. This study demonstrates that occupational therapy is feasible in residential homes at modest cost. It may uncover unmet needs for some services. Future studies should match groups for hospital use at baseline.
The primary aim of the study was to test the hypothesis that depression severity in care homes for older people would be reduced by an occupational therapy programme. This was a feasibility study for a cluster randomised controlled trial and involved four intervention and four control homes in northern England. In each intervention home a registered occupational therapist worked full-time for one year delivering an individualised programme to participants. Pre- and post-intervention data for the Geriatric Mental State-Depression Scale (primary outcome measure) were obtained for 143 participants. Secondary outcomes included dependency and quality of life. No significant intervention effects were found in any of the quantitative outcome measures, though qualitative interviews showed the intervention was valued by many participants, staff and relatives. Therapist ratings and qualitative interviews suggested that the intervention was beneficial to some participants but no distinctive characteristics were found that might enable prediction of likely benefit on initial assessment. This exploratory study provides no evidence that this intervention produced benefits in terms of depression, dependency or quality of life. Lack of prior power calculations means these are not definitive findings; but numbers were sufficient to perform the required analyses and data did not suggest effects that would have reached statistical significance with a larger sample. This study highlights issues for consideration in providing such services in care homes.
Background Caring for a family member with dementia who becomes withdrawn, agitated, aggressive, or communicates 'unmet need' through other expressions of distress potentially reduces well-being and increases distress among family carers (Moniz-Cook et al, 2017). Any one of these alone or in combination often adversely affects family relationships (Nogales-González et al, 2015) as well as the quality of life of the person with dementia (Hurt et al, 2008). Umbrella terms for distressing symptoms in dementia, which are often used interchangeably, include 'challenging behaviour' (Moniz-Cook et al, 2017), 'behavioural disturbances' (Abraha et al, 2017), behavioural and psychological symptoms in dementia-BPSD (Feast et al, 2016) or 'non-cognitive symptoms and behaviour that challenges' (NICE, 2010). These expressions of unmet needs affect nearly all people with dementia and/or their carers at some time. When persistent, they are associated with breakdown of care at home and moves to care homes (Gaugler et al, 2010). England's National Dementia Strategy (Department of Health, 2009) recommended increasing community-based personal support, reducing use of antipsychotic medication and exploring alternative approaches to the management of challenging behaviour. In this paper, we use the term 'carers' to refer to 'informal' or family carers (including close neighbours or friends providing This is a post-peer-review, pre-copy edited version of an article published in
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