Date: 04 June 2016
The six programmes of research described in the NIHR Highlight on supporting carers of people with dementia are large and important studies that have been funded by NIHR, which in itself reflects the importance of dementia care in the national research agenda.
In the past, studies have often focused on simply describing the issues that carers face and the pressure that they are often under. More recent research seeks to be more active and to evaluate interventions that will influence practice, support carers, and lead to better outcomes for people with dementia themselves.
In considering this group of studies, the first question may be to ask whether there is a common message arising from their findings.
Overall, I think the studies demonstrate that there are no quick wins, no panaceas, no single thing that dramatically changes the situation of carers or the lived experience of having dementia. Instead, this body of work is about incremental improvements.
For example, providing a manual-based training programme for carers is moderatelyeffective and also cost-effective. Probably within the group of people who participated, some of the carers found it very useful but others may have found it of little or no use. It certainly seems as though proactively asking questions about continence with families is a good idea as they may be embarrassed to raise the issue themselves.
There are several audiences for the research presented in this Highlight. These include the research community and the funders of the research. The findings are internationally relevant: dementia is a global problem and the UK has several world-leading research groups in the field of psychosocial interventions in dementia. Other people who will be interested are clinicians working in this area, both those who work in specialist practice but also GPs, community nurses and care home staff. There is also a public audience. They probably aren’t going to read the scientific journals where these findings are published but they do need to know what is going on, how their taxes are being spent on research, and also what glimmers of light there are in the well of dementia.
I have some other questions for this group of studies. What do they tell us to do differently? What research is needed next? And, are there any gaps, anything that’s missing? Some of the studies, for example, the exploration of carers’ perceptions of crises have already led to further research that is now underway. In the case of the crisis study, this is to develop resources to help professionals and carers to be better prepared when things suddenly change. A common thread between nearly all the studies is that to improve matters requires better, clearer communication with family carers.
One issue that remains unresolved despite quite a lot of research is the question of how care should best be organised. The literature review of case management described here had mixed findings. Under some circumstances, this model works well but this does not always happen. It’s a bit like integrated care, a phrase that people love to use. On the surface, what’s not to like? The opposite, presumably, is chaotic, fragmented care, and that doesn’t sound good. Yet it is surprisingly difficult to find good evidence of integration working well. There is no evidence that attempts to achieve integrated care by organisational change have been successful. I suspect that what matters more is not belonging to the same organisation but having an environment where relationships between key people are allowed to flourish.
Finally, the missing element is what about the people with dementia? If carers and professionals don’t always agree about what constitutes a crisis, what do people with dementia think? I expect that patient and public involvement will start to shape research and practice much more over the next few years - for example, agenda setting through the James Lind Alliance. I’d welcome that. I hope that bodies like Dementia Alliance International will become more influential in setting the agenda and working alongside researchers to make a difference.
Professor Tom Dening looks at NIHR research into supporting carers of people with dementia and the questions that arise from the evidence.
University of Nottingham