Do we need research?

A friend who had been to a talk at the Cheltenham science festival yesterday, told me about The Cochrane Collaboration ( an international network who produce “systematic reviews of primary research in human health care and health policy, and are internationally recognized as the highest standard in evidence-based health care.”

We’re often asked at Pictures to Share what published research we have to prove the benefits of what we do. So this seemed like a great place to try to find out once and for all, what evidence there really is out there for the various interventions regularly recommended for improving the mental health and quality of life for people with dementia.
There were reports on research into a variety of ‘interventions’ or ‘therapies’ including massage, aromatherapy, music therapy, reminiscence therapy, the use of snoezelen equipment, physical activity programmes and light therapy. For all of these interventions the evidence was considered poor or inconclusive. 
So does this mean that carers should wait until there is clear, conclusive evidence before trying any of these activities with those with dementia. Of course not.  It may never be available.  Yet many of these interventions may well work successfully.
The problem for researchers is that those with dementia are not one homogenous group. They’re individuals with very different personalities that are affected by dementia in different ways at different stages and even at different times of day. Some people will respond to one type of activity at 10 o’clock on Tuesday but not at 4 o’clock on Friday, or will respond in the fourth year of their dementia but not in the fifth. Whilst some will respond dramatically to an activity, others will never respond because that activity does just not suit their personality.
Robust trials and evidence are essential in the pharmaceutical industry where the evidence of physical or mental benefit or harm is clear. But we are dealing with something far more subtle and far less tangible when we are trying to measure the benefits of simple activities that should just be part of our everyday life choices.
The Cochrane reports do highlight that programmes that involve educating and supporting care staff and that improve communication between care staff and those with dementia are the things that work best; that trying to understand the cause of challenging behaviour in an individual, and then coming up with suitable individualized solutions is actually most effective at reducing distress. This is common sense. Carers with a better understanding of how dementia affects behaviour and who treat those with dementia in a more appropriate way will be better carers and those they care for will be happier. To recognize and respond appropriately to the special needs of the individual is a key part of good care.
To put it another way, we must give people the opportunity to live in the fullest way they can by offering them the chance to engage all of their senses, abilities and emotions.  The ability to engage will change as the dementia progresses and it will clearly help if carers understand the potential for meaningful engagement that each stage of dementia offers, and the problems that people with dementia face in understanding the world around them.
Living with dementia is living in a world that is governed by lots of emotion and feelings. Both cared for and carers desperately need practical help to overcome the relentless emotional challenges of daily life, and the various needs of people with dementia need to be understood and met in the best way possible. If music, aromatherapy, looking at picture books or just sitting holding someone’s hand makes life easier or more enjoyable for someone with dementia for half an hour in a day, it is a valuable ‘intervention’. Do we really need these everyday activities, which are part of normal life, to be validated by formal research to prove that they work?
Helen J Bate

7th June 2013