A randomised controlled trial to evaluate the impact of a human rights based approach to dementia care in inpatient ward and care home settings

BackgroundAlthough it is widely recognised that adopting a person-centred approach is beneficial in the care of people living with dementia, a gap remains between the rhetoric and the reality of quality care. Some widely adopted care practices can result in the personhood of this group being threatened and their human rights being undermined.ObjectivesTo evaluate the impact of applying a human rights based approach in dementia inpatient wards and care homes on the quality of care delivered and the well-being of the person living with dementia.DesignA cluster randomised design was employed to compare the impact of implementing a human rights based approach intervention (i.e. training, applying the ‘Getting It Right’ assessment tool and receiving booster sessions) at 10 intervention sites with 10 control sites.SettingEight NHS dementia inpatient wards and 12 care homes in the north-west of England.ParticipantsPeople living with dementia who were residing on dementia inpatient wards or in care homes, and staff working at these sites. The aim was to recruit 280 people living with dementia.InterventionsA sample of staff (an average of 8.9 per site) at each of the sites was trained in a human rights based approach to care, including the application of the ‘Getting It Right’ assessment tool. The tool was then introduced at the site and monthly booster sessions were delivered.Main outcome measuresThe primary outcome measure used in the research was the Quality of Life in Alzheimer’s Disease scale to assess the subjective well-being of the person with dementia. Secondary outcome measures included measures of the quality of care provided (dementia care mapping) and direct measures of the effectiveness of the training in increasing knowledge of and attitudes towards human rights. The study also included an economic evaluation utilising the EuroQol-5 Dimensions, three-level version, and the Adult Social Care Outcomes Toolkit measure.ResultsThe study recruited 439 people living with dementia: 213 to the intervention arm and 226 to the control arm. Primary outcome data were analysed using a linear mixed model. There were no significant differences found in the reported quality of life of residents between the control and intervention groups after the intervention [F(1,16.51) = 3.63;p = 0.074]. The mean difference between the groups was 1.48 (95% confidence interval –7.86 to 10.82).ConclusionsDespite the fact that the training increased staff knowledge of and positive attitudes towards human rights, and although there were some changes in staff decision-making strategies in clinical situations, there was no change in the quality of care provided or in the reported well-being of people living with dementia in these settings. This led to questions about the efficacy of training in bringing about cultural change and improving care practices.LimitationsThere was limited uptake of the training and booster sessions that were integral to the intervention.Future workFuture work could usefully focus on understanding the difficulty in translating change in attitude and knowledge into behaviour.Trial registrationCurrent Controlled Trials ISRCTN94553028.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full inHealth Services and Delivery Research; Vol. 6, No. 13. See the NIHR Journals Library website for further project information.</jats:sec

Making Hampshire a dementia- friendly county. Finding out what a dementia friendly community means to people with dementia and carers

This is a guide for people working with people with dementia and their carers. In particular it is for those who want to support people with dementia and their carers to have a say in building a more dementia-friendly Hampshire. Inside you will find notes to support you in finding out what is important to people with dementia about their communities, and what can be done to make them better places in which to live well with dementia. You will find guidelines for discussing the issues with people with dementia face to face, as well as a questionnaire for people who might prefer, and are able to work alone. You will also find a description of “walking the patch” – a way of finding out what it is really like for people with dementia out and about in their communities. We have included findings from previous consultation work with people with dementia, to help you think about the various ways in which people with dementia in other areas are interacting with their communities, and the barriers they face. This guide is aimed squarely at finding out what people think about their communities - it is not intended to be a comprehensive and exhaustive guide to consulting with people with dementia, so we have included links and suggestions for further reading

Making Hampshire a dementia- friendly county. Finding out what a dementia friendly community means to people with dementia and carers

Praktisk veilederThis is a guide for people working with people with dementia and their carers. In particular it is for those who want to support people with dementia and their carers to have a say in building a more dementia-friendly Hampshire. Inside you will find notes to support you in finding out what is important to people with dementia about their communities, and what can be done to make them better places in which to live well with dementia. You will find guidelines for discussing the issues with people with dementia face to face, as well as a questionnaire for people who might prefer, and are able to work alone. You will also find a description of “walking the patch” – a way of finding out what it is really like for people with dementia out and about in their communities. We have included findings from previous consultation work with people with dementia, to help you think about the various ways in which people with dementia in other areas are interacting with their communities, and the barriers they face. This guide is aimed squarely at finding out what people think about their communities - it is not intended to be a comprehensive and exhaustive guide to consulting with people with dementia, so we have included links and suggestions for further reading.Hampshire City Counsil Innovations in Dementia Local Government Associatio