Managing Agitation and Raising Quality of Life Study, 2014-2019

DOI

The record contains 5 bundles of data described below: 1. Longitudinal cohort study: A longitudinal cohort study from 97 care homes around England, about 1483 residents living with dementia. 2. Follow-up qualitative study: A follow-up qualitative study as part of the randomised controlled trial of the acceptability of the MARQUE care home staff intervention to manage agitation and improve quality of life. 3. Qualitative interviews with family carers: Qualitative interviews with family carers of people with dementia who were currently in hospital or living in a care home. 4. Ethnographic observational data: Observational data of people with severe dementia who are either living in care homes or admitted to an acute medical ward. 5. Feasibility trial: Data from a feasibility trial of an intervention to improve the management of agitation in care home residents living with severe dementia.In the UK about 820,000 people live with dementia with numbers increasing rapidly as the population ages. The Government's "Challenge on Dementia" aims to drive improvements in health and care, create dementia friendly communities and improve research. Responding to this challenge, our MARQUE programme "Managing Agitation and Raising Quality of Life", aims to increase knowledge about dementia, agitation and personhood. We will use the programme to: -develop our theoretical knowledge of dementia, agitation, how people with dementia and their carers experience these and their relationship to citizenship and personhood. -reduce agitation in people with moderate and severe dementia and thus increase quality of life, through the known link between agitation and quality of life. -mentor existing and train new researchers, to build a legacy of trained dementia researchers. Agitation is common, occurring in about 50% of people with moderate or severe dementia every month, is distressing for them and for those around them. The symptoms include restlessness, pacing, shouting or even verbal or physical aggression and signify unmet need. The person with dementia may be in pain, hungry, thirsty, needing comfort or bored but unable to know or explain this. Our group (including Shirley Nurock, an Alzheimer's Society carer) has completed a funded literature review on interventions to reduce agitation. Our vision is to build on this evidence, advancing knowledge, including how to effectively implement findings to improve quality of life for those with dementia. It is a bold and ambitious proposal by a multi-professional team, our family carer partners and participating national and international groups. The team, who have previously worked together successfully, comprise social sciences, medicine, nursing and psychology. A DeNDRoN PPI focus group advised on and approved our proposal. We are partnered by Alzheimer's Society who are leading PPI, care home groups and voluntary and parliamentary groups. The research will involve observing and interviewing a wide range of people with dementia and those who care for them at home, in care homes and in hospitals (including end of life) in order to better understand how agitation is currently managed, barriers to good practice and how care could be improved. We will use this information (with our literature review findings) to develop, test and implement a manual to train staff about how best to reduce agitation and improve quality of life in care homes. It will be tested in a randomised controlled trial in 14 care homes. Our vision is to make this as central to care as good eating and hygiene. Our programme at home will lead to a pilot home intervention, including massage, found to be effective in our review. In addition, we will further develop another manual, to improve people with dementia's end of life for, including "terminal agitation" (comprising restlessness, anxiety, sleeplessness and shortness of breath around the time of dying). This manual will be piloted in four nursing homes (and a control home) and staff, family and residents asked whether it is helpful, practical and feasible. Our programme lasts 5 years but we expect carers and people with dementia to start to benefit from 2 years as we begin testing. It will improve our understanding of current practice and the challenges for family and paid carers. We will have programmes to put into practice across the UK to help manage agitation, including at home, in care homes and at the end of life. We will know what works, is cost effective and how to implement. This will improve quality of life for people with dementia and their carers wherever they live and will help guide research and practice. Our partners will then work with us to ensure national publicity and implementation. This will include incorporation into care home and hospital inductions and feedback to Care Quality Commission as a potential new care standard.

  1. Longitudinal cohort study: The longitudinal cohort study data collected from 97 care homes around England, about residents living with dementia. Data was collected at baseline, 4 months, 8 months, 12 months and 16 months. Data collected about residents with dementia included quality of life, agitation, neuropsychiatric symptoms, dementia severity, health services utilisation, and medication. Other data collected included care home characteristics, staff characteristics and surveys, and family carer characteristics. 2. Follow-up qualitative study: Follow-up qualitative study as part of the randomised controlled trial of the MARQUE intervention to manage agitation and improve quality of life. Twelve semi-structured interviews with staff from six care homes in England who received the MARQUE intervention. 3. Qualitative interviews with family carers: Nine semi-structure qualitative interviews with ten family carers of people with dementia who were currently in hospital or living in a care home. 4. Ethnographic observational data: Observational data from 18 people with severe dementia who are either living in care homes or admitted to an acute medical ward. Participant observations 0601-0605 are in care homes, and observations 0101-0505 are in acute medical wards. 5. Feasibility trial: Data from a feasibility trial of an intervention to improve the management of agitation in care home residents living with severe dementia. Data collected on the residents included characteristics, agitation, quality of life, pain and end of life care. Data collected also included care home characteristics, staff characteristics and surveys, and family carer characteristics.
Identifier
DOI https://doi.org/10.5255/UKDA-SN-854856
Metadata Access https://datacatalogue.cessda.eu/oai-pmh/v0/oai?verb=GetRecord&metadataPrefix=oai_ddi25&identifier=f699e847cda6e1ea49627c49ad2dd5a252339e85f5ec99919b2998bc6418d3ab
Provenance
Creator Livingston, G, UCL
Publisher UK Data Service
Publication Year 2021
Funding Reference ESRC
Rights Gillian Livingston, UCL; The Data Collection is available to any user without the requirement for registration for download/access.
OpenAccess true
Representation
Language English
Resource Type Numeric; Text
Discipline Social Sciences
Spatial Coverage United Kingdom