Poster Number
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
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
Person with
dementia
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.
Any individual with memory
problems that lives in a
care home and is able to
participate will complete the
DEMQOL .
Background
.
80% of people living in care homes have dementia1.
PhD study aims
Less than half of these are enjoying a good quality of life1.
symptoms2.
Recent government funding has been put into trials which aim to
improve quality of life in people with dementia.
A family member or friend
that visits at least once a
month will complete the
DEMQOL Proxy.
Perspectives on Quality of Life
Dementia is now a public and political priority.
Quality of life is considered more important than disease specific
Relative of
person with
dementia
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.
 Understanding how best to measure quality of life for people with
Primary Objective
.
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
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.
carers and family carers.
Progress so far
DEMQOLs Collected
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.
Since
recruitment
began in
April 2014
over 800
DEMQOLs
have been
completed
167
360
Number of Staff
DEMQOL-Proxys
Number of Relative
DEMQOL-Proxys
Number of Resident
DEMQOLs
283
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.
For further information about MARQUE
Visit our website at http://www.ucl.ac.uk/psychiatry/marque
Follow us on twitter @MARQUEProject
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.