Sarah Robertson is a PhD student with funding from the NIHR Collaborations in Leadership in Applied Health Research and Care. Sarah is currently supervised by Professor Gill Livingston, Dr Claudia Cooper & Dr Juanita Hoe.
The MARQUE project
In 2012, the UK government announced that in the face of “one of the biggest health challenges ever” that it was time to “fight back” against dementia. In response, the ESRC & NIHR pledged £9 million towards “Improving Dementia Care”. One of the projects funded by this initiative is the Managing Agitation Raising Quality of LifE (MARQUE) project at UCL led by Professor Gill Livingston. MARQUE began in 2014 and aims to improve our understanding of agitation in care homes and improve the quality of life of people with dementia. Sarah has been working as part of the MARQUE team at UCL and this work inspired her thesis comparing the perspective of paid and family carers in quality of life.
Proxy rated quality of life
Measuring quality of life in dementia presents unique challenges. With the stakes so high, it is important that we understand what we are actually measuring to know whether our interventions to enable people to live well are successful. Many people with dementia in care homes cannot provide ratings on their own quality of life so we rely on the perspectives of people close to them. We call these proxy reports. These reports differ to self-reported quality which has raised questions about the validity of this outcome. However, we do not know how staff and family proxy reports compare.
How do staff and family ratings compare?
MARQUE collected the perspectives of both staff proxies and family proxies from 86 care homes across England; providing 1,054 pairs of proxy ratings in the largest sample to date. For the first time, we used mixed method to explore staff and family ratings.
Our results suggest that staff and family proxies think differently about the quality of life of the same individual with dementia. Quantitative data from this study reveals that staff generally perceive the quality of life as better than family. Staff and family are affected by their own understandings of dementia and their experiences with care. Staff often viewed quality of life as synonymous with quality of care, whereas, family were more influenced by their past experiences.
Many relatives found that the person with dementia had changed. For some, this change centred on loss which they felt evidenced a poor quality of life. Other relatives felt that quality of life is simply not possible living in a care home. Transitioning into a care home is not only stressful at the time, it may leave a lasting impact on how relatives view the quality of life of a person with dementia in the future. Relatives need support to think about how the person with dementia feels in the present moment, focusing on their enjoyment of life with an acceptance of the current situation. Better communication and transparency in care routines helped facilitate relative involvement within care homes, establishing trust which improved perceived quality of life and reduced family carer stress.
What does this mean for dementia research?
- Proxy reports provide valid measures of perceived quality of life.
- Proxy raters are influenced by their own context and experiences.
- Proxy ratings by different raters cannot be used interchangeably.
- Different proxy ratings may be differently sensitive to interventions.
- The different opinions of all key stakeholders should be considered.
What does this mean for clinical practice?
- Within care homes, there are context specific factors that influence resident quality of life.
- Psychological interventions that target loss, focus on acceptance and enable proxies to find meaning could improve perceived quality of life.
- Improving the relationship between staff & family could improve perceived quality of life.
- There may a link between perceived quality of life and carer quality of life.
The CLAHRC Academy held its latest installment of the popular Introduction to Evaluation workshop on Tuesday 13 June.
With 28 delegates from a wide range of NHS Trusts, Local Authorities and CCGs, there was in-depth discussion and engagement around all aspects of the evaluation process.
Throughout the day, delegates applied what they had learnt to create their own plans for service evaluations, and shared ideas and experiences with tutors and each other.
A few comments from our participants:
“Vey engaging, I particularly enjoyed/liked the exercises after each session.”
“A good comprehnsive overview of evaluation technniques“.
“Very professional & informative. Useful & applicable to the work I do.”
Thank you to all those who attended – your engaged participation made for a very interesting workshop.
Interested in attending this course? We will be running the Introduction to Evaluation workshop again on 13 December 2017: click here for details.
Want to keep up to date with news on our upcoming courses? Email us at at Clahrc.email@example.com to be added to our mailing list.
CLAHRC PhD Sarah Robertson is focusing on the quality of life of people living with dementia. Part of Sarah’s work compares the perspective of paid and family carers in quality of life. In a blog published on the Economic and Social Research Council website Sarah discusses the views of care home staff and relatives.
On 22 March, the NIHR CLAHRC North Thames Academy held its first face-to-face course of 2017, with a workshop on Economic Evaluation held by Professor Stephen Morris, Dr Elena Pizzo, Dr Estela Capelas Barbosa, Nishma Patel and Nicholas Swart, all from UCL.
The workshop was oversubscribed, and on the day, we had 28 participants with specialists from a wide range of organisations including GPs, hospitals, public health departments, and Clinical Commissioning Groups.
Throughout the day, the tutors guided the delegates through the essential aspects of designing an economic evaluation of a health service or intervention. Session topics included measuring costs, measuring outcomes and measuring cost-effectiveness, with practical exercises to supplement the theory.
Tutors (from left to right): Estela Capelas Barbosa, Elena Pizzo, Stephen Morris and Nick Swart
In the afternoon, delegates discussed in groups the economic evaluations they are planning to carry out, and had the opportunity to share ideas with colleagues from across different sectors and organisations. The wealth and range of experience in the room led to many interesting in-depth discussions, and shed light on a variety of issues and perspectives.
Many thanks to all the delegates who attended!
“Very comprehensive course and very high level of subject knowledge in the teaching team”
“Excellent coverage and pace. Assumes a capable audience and provides a stimulating day.”
“Really helpful introduction to concepts and will really help with own project”
We were really pleased to receive positive feedback from participants, and are in the process of planning the next Introduction to Economic Evaluation workshop to be held on 8 November 2017 – details coming soon. Visit our Academy page to find out more about us and our other upcoming workshops.
— Pop&LimHealthNet (@PopLimeHealth) March 22, 2017
The NIHR CLAHRC North Thames Academy has just opened applications for its next short course – Introduction to Evaluation, to be held on June 13, 2017.
Do you need to demonstrate the impact of projects in your organisation?
Do you want to improve the design and implementation of your programmes?
Are you tasked with carrying out an evaluation, but don’t know where to start?
This one day, hands-on Introduction to Evaluation workshop addresses these challenges, and covers the skills and knowledge needed to undertake your own evaluation of a local programme or service. Aimed at staff from NHS Trusts, CCGs and Local Authorities, this workshop requires no previous experience of study design, statistics or evaluation.
To find out more about this one day course and how to apply, please click here.