Methodological limitations …. small samples…..not randomised…..poorly defined…..no control groups……..art programmes not well defined or documented (what did they do??)……..a-theoretical………..only interested in reducing difficult behaviour….not enough focus on quality of life and well-being….what are the community benefits?
These are some of the major criticisms levelled at the limited amount of research that has tried to demonstrate the positive impact of art activities (particularly visual arts) on people living with dementia. Admittedly, some of the research to date is poor, but there is a handful of promising work which our study, Dementia and Imagination builds on.
Our research is best described as a series of inter-linked programmes of work. Each is led by one of the team investigators
. We are a diverse team and truly multi-disciplinary. From arts and humanities to clinical psychology, gerontology and health economics, each of us using our disciplinary strengths to lead aspects of the work. We are researching and collecting data with and from artists, people living with dementia, carers, staff in care facilities and staff in museums. In due course we’ll broaden this to the general public who in some way will be ‘exposed’ to our work. We have a lot to pack in over the next couple of years!
I would like to return to the criticisms noted above and discuss a couple from my perspective as a researcher and gerontologist, whose work cuts across health and psychology with a good splash of social policy. I’ll do this in the context of my work-themes which are focussing on collecting data from people living with dementia. This complements the contribution of other investigators on D&I, who are collecting data from other participants.
Let’s take the ‘small samples’ (i.e. small numbers of participants). Yes, if you are doing statistics, numbers are important. In reality, recruiting people with dementia to research studies is really difficult. I know, recruiting participants is always hard, but a diagnosis of dementia often leaves people isolated and withdrawn. If wishing to work with people living in care homes, many are not able to provide informed consent and then researchers have to spend time talking to their carers/relatives.
A well-resourced study can do this (as we are doing) but it takes time and requires researchers to have good skills to communicate with people who may be severely impaired. We are hoping that by the end of our research, at least 100 people living with dementia will have taken part. This isn’t quite on the same level as the numbers that would be in a clinical trial but for the type of research we are doing, it certainly isn’t ‘small’!
‘Not randomised’ and ‘no control groups.’ Yes, from a health perspective, if we are to persuade commissioners of the merit of arts activity, we will often need to show it performs uniquely better than normal activity. To a certain extent, to address this criticism would require a randomised controlled trial. However, that’s expensive, requires a lot of participants, and is certainly not the remit of the Connected Communities programme (although I would like to do one!).
I was quite keen we tried to tackle this though, so just for the people living with dementia who are participating in our fantastic arts programmes, one of the approaches we are using is what is known in psychology as a ‘repeated measures’ design. With this approach, our participants act as their own controls. We collect some of our data on well-being through observing them in their control session (described as usual activity) and then at further points in time across the arts sessions.
This will enable us to see if art is better than usual activity, and if art improves well being over time. Sounds simple?! In reality, people don’t always turn up when you need them, the control sessions can inadvertently be just as much fun, etc. But for people who may have trouble answering questions about their quality of life and well-being because of their memory problems, using a systematic way of viewing and coding engagement, communication, pleasure, etc. is a promising way of capturing the unique value to them at that moment in time.
‘Atheoretical’, ‘what did they do’? Now this is an important aspect, if we are to understand the ‘cultural value’, ‘benefits’, ‘effects’, etc., especially if other arts practitioners would like to deliver the same type of activities………..
.......to be continued