Title: Development of an assessment of the liberty protection safeguards. A mixed methods study.
Funder: Health Education England

Abstract: Title Development of an assessment of the liberty protection safeguards. A mixed methods study BackgroundOver 800,000 people in the UK have dementia. The majority of these people live at home and are cared for by over 600,000 carers (1,3). As dementia progresses the affected person may lose the ability to make some decisions, this is defined as a loss of capacity and may lead to the person attempting to leave their home unsafely. In a domestic setting carers may lawfully prevent this from happening whereas in the public sector the carers' actions would be defined as a deprivation of liberty (DOL) and require formal legal authorisation (4). It is proposed the law will change and be extended to the domestic setting resulting in new regime referred to as the liberty protection safeguards (LPS). This process of DOL authorisation may be instigated by occupational therapists when services such as telecare or home adaptations are required or by other health and social care professionals (11). This intervention could represent the opportunity to identify those at risk of crisis and offer patient benefits such as sitting services and telecare technology (7, 15). Such interventions may facilitate the liberty of those who have dementia and reduce the pressure upon carers. Alternatively this assessment may place additional demands upon carers by specifying the care regime which must be provided and failing to incorporate any patient benefit.Aims.The primary aims areTo develop an OT assessment tool for the liberty protection safeguards which integrates law and needs of people living with dementia and carersTo inform statutory change and implementation with the experience of carers and people who have dementia Design and Method. The study has 3 componentsA mixed methods literature review of the literature relating to deprivation of liberty in a community setting. This review will integrate empirical clinical work and legal literature.A series of semi structured interviews with people who have dementia, carers and clinicians to identify experiences of deprivation of liberty in the community and perspectives of those affected on proposed legal change.Domains will be developed from the themes identified in stage 1 and 2 with legal input which will inform the development of an assessment tool. This assessment to be reviewed and developed by an expert panel in an online Delphi study. PPI Involvement This study was developed following consultation with a PPI group at Nottingham University Hospitals Trust. The group kindly reviewed this application. The concerns expressed by group members led to the formation of a small PPI group that could meet more frequently. PPI input led to the following significant changes.1. Initially it was not proposed people living with dementia were included in the research. Clinical staff and carers felt this exclusion would fail to present the views of people who have dementia being fully represented, accordingly the research design was amended to include participants who have dementia.2. Healthcare professionals felt the MCA was not well understood by clinical staff, the focus of the research was then changed to the development of an assessment.Dissemination and outputs The study will be written up in a doctoral thesis with the following outputs and dissemination1. Through publication of the study in peer reviewed journals, DOLs conferences and forums and lectures at clinical and legal conferences2. During the course of the study findings will be disseminated to the law commission and House of Commons Select Committee on dementia3. Through stage 3 of the study the assessment tool to be tied to government advice on the implementation of the amendments to the MCA 2005.

Lay abstract: AimsThe study aims to develop a community OT assessment of the liberty protection safeguards which reflects the needs of people living with dementia and their carers Background and design of research Over 800,000 people in the UK live with dementia. The majority of those who have this condition live in the community and are supported by over 600,000 unpaid carers (1, 3). People who live with dementia may have problems with memory and cognition such as disorientation to time and place and inability to recognize and weigh risk (1, 3). Over time the ability to make some decisions may be lost, this loss of decision making ability is defined as a lack of capacity. For example the person living with dementia may lose capacity on whether it is safe to leave their home, causing attempts to leave the home unsafely. The Alzheimer's society (2) suggest that over 60% of those living with dementia who live at home will attempt to leave their homes unsafely many doing so on several occasions. Carers for people who have dementia may prevent the person they care for leaving their home. At present this act is lawful if to remain in the home is in the person's best interests and the option which imposes the least restrictions on the person who has dementia (4). Within institutional settings such as hospital or residential home preventing a patient who lacks capacity from leaving may amount to a situation defined legally as a deprivation of liberty (DOL) which would require formal authorization from an assessor to be within the law. A legal change is proposed which will extend the law to the domestic setting resulting in carers requiring formal authorisation for this action. The law commission propose that the new structure would identify those who are denied their liberty when they come into contact with services such as assessment of cognition or adaptations to their homes (11). Such interventions are central to the role of occupational therapists (OT) and could represent the opportunity to identify those at risk of crisis and offer patient benefits such as sitting services, benefit advice and telecare technology (7, 15). Such interventions may result in OTs facilitating the liberty of those who have dementia and reducing the pressure upon carers. Alternatively this involvement may place additional demands upon carers by specifying the care regime which must be provided. This may make the stress of caring intolerable precipitating crisis and in the most severe cases institutionalisation.The aims of this study are twofold; to develop a legally compliant tool for OTs to assess liberty protection safeguards which is consistent with the needs of carers and people living with dementia and secondly to influence statutory change and implementation to ensure legal amendment is consistent with patient benefit.Research designThe research will have three componentsA review of published literature relating to deprivation of liberty from a clinical and legal perspective.Semi structured interviews with people who have dementia, carers and clinicians identifying different perspectives on the issue of liberty and the law. Components one and two will form the basis for development of an assessment.The development of the assessment tool through the findings of component one and two of the research with input from the supervisory team, lawyers and PPI. The tool will be developed further through an online Delphi study with a panel of expertsPatient and public involvementThe research question, methods and dissemination plan have been put together with members of the frail older persons, dementia and palliative care PPI group and a small additional group comprised of clinicians and carers. These groups reviewed this application. PPI input will continue to impact on:The interview questions and guide to ensure their suitability for the different groups of participants.Ensuring the participant information sheets are in plain and understandable English.Reviewing the findings of the literature review and interviews to offer a different perspectiveContributing to the development of the assessment. DisseminationThe study will be disseminated to voluntary sector organisations for carers and people who have dementia, professional bodies, clinicians, the law commission and the House of Commons select committee on dementia in the following ways.Publications in peer reviewed journals, conference presentations and professional associations. Disseminated to law commission staff as part of the supervisory team in part 3 of the research.Links will be built with voluntary sector organisations such as the carer's federation and Alzheimer's society and the research disseminated through their networks.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL