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Quality of life: a comparison of the perspectives of paid staff, family relatives and individuals with dementia in care homes. Sarah Robertson Division.

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Presentation on theme: "Quality of life: a comparison of the perspectives of paid staff, family relatives and individuals with dementia in care homes. Sarah Robertson Division."— Presentation transcript:

1 Quality of life: a comparison of the perspectives of paid staff, family relatives and individuals with dementia in care homes. Sarah Robertson Division of Psychiatry Acknowledgements With thanks to my supervisors: Professor Gill Livingston, Dr Claudia Cooper, Dr Juanita Hoe References 1. Alzheimer’s Society 2013. 2. Cooper et al 2012. Poster Number The MARQUE Project Managing Agitation and Raising Quality of Life Responding to the government's 'Challenge on Dementia', MARQUE is a five year long national study that aims to increase knowledge about dementia, agitation and personhood. As part of MARQUE, quality of life data is collected wherever possible, from the person with dementia, a paid carer and a family member or friend. We are doing this using the DEMQOL: Dementia Quality of Life Measure and the DEMQOL Proxy. Paid Staff in the Care Home A member of staff that works in the care home and is directly involved in the care of the individual with dementia completes the DEMQOL Proxy. Person with dementia Any individual with memory problems that lives in a care home and is able to participate will complete the DEMQOL. Relative of person with dementia A family member or friend that visits at least once a month will complete the DEMQOL Proxy. MARQUE Recruitment to date The map below shows the 30 care home clusters we are currently recruiting from across England. Of the 688 potential participants, 443 (62%) residents have been consented to the study. We aim to recruit 1734 residents. A total of 1179 participants recruited including staff, relatives and residents. Perspectives on Quality of Life Progress so far We are continuing to recruit care homes, paid staff, people with dementia and their family relatives. I have started a Systematic Review of the similarities and differences in quantitative ratings of quality of life for family carers, paid carers and people with dementia. Search Terms: Dementia or Alzheimer’s Disease, Quality of Life, Proxy. Databases: PubMed, Medline, Embase, PsychInfo, CINAHL. Next Steps Submit ethics amendment for qualitative analysis. Plan for upgrade in 15 months. Background  Dementia is now a public and political priority.  80% of people living in care homes have dementia 1.  Less than half of these are enjoying a good quality of life 1.  Quality of life is considered more important than disease specific symptoms 2.  Recent government funding has been put into trials which aim to improve quality of life in people with dementia.  Understanding how best to measure quality of life for people with dementia is vital.  Quality of life of people with dementia often also needs to be rated by a proxy i.e. a paid or family carer.  We do not know if proxy reports systematically differ between paid carers and family carers. Since recruitment began in April 2014 over 800 DEMQOLs have been completed For further information about MARQUE Visit our website at http://www.ucl.ac.uk/psychiatry/marque Follow us on twitter @MARQUEProject PhD study aims.. To investigate whether there is a difference in how paid staff, family relatives and people with dementia rate the person’s with dementia quality of life. To explore, quantitatively and qualitatively, factors which may explain any differences. Primary Objective To compare family carer and staff rated DEMQOL proxy ratings to see whether there is a difference in the ways in which they rate the quality of life of the same individual. Primary Objective To compare family carer and staff rated DEMQOL proxy ratings to see whether there is a difference in the ways in which they rate the quality of life of the same individual..


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