Sarah Robertson is a PhD student with funding from the NIHR Collaborations in Leadership in Applied Health Research and Care. Sarah has been working as part of the Managing Agitation and Raising Quality of Life in dementia (MARQUE) team at UCL and this work inspired her thesis comparing the perspectives of paid and family carers in quality of life.
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”. These challenges were presented by dementia which to this day, remains a public and political priority. In the same year, David Cameron launched his first Dementia Challenge. In response, the ESRC and NIHR pledged £20 million towards Improving Dementia Care and a number of large research projects were funded to support the shared global objective of enabling people to live well with dementia.
The MARQUE project
One of the projects funded by the Improving Dementia Care initiative is the MARQUE (Managing Agitation and Raising Quality of Life in dementia) project at UCL. 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. Agitation can refer to a variety of different behaviours where a person’s activity does not appear to be purposeful, including restlessness, pacing, repetitive vocalisations and verbally or physically aggressive behaviour.
I developed a thesis embedded within this project looking at the ways we measure and evaluate quality of life for people with dementia living in a care home. Three years on, we are finding interesting results from this work.
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 methods 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 reducing family carer stress.
What does this mean for dementia research?
Whilst it may be tempting to dismiss proxy quality of life measures as “invalid”, research studies should appreciate these outcomes as a valid and meaningful measure of perceived quality of life. Ratings of quality of life are, and will remain, subjective outcomes. Each person’s perception can still be useful in evaluating the impact of interventions when it is understood and valued as unique.
We should design multilevel interventions aimed at the person with dementia, their professional carers, their relatives and the organisation they live within. To evaluate the success of our interventions, we should aim to collect the opinions of all key stakeholders in the resident’s quality of life and appreciate that these opinions are not interchangeable. With this approach, we will be most sensitive to improvement in this area and, as a result, we will stand the best chance of improving resident and carer quality of life.