Dementia friendly communities blog post 09/05/2017
When we say ‘dementia friendly’, what are we comparing it to?
By Christopher Skedgel
The DEMCOM study is, in part, about understanding the impact of dementia friendly communities on the well-being of people with dementia and their carers. We expect that different forms ‘dementia friendliness’, such as Nicole mentioned in the previous DEMCOM blog post, will make it easier for people to stay engaged and to fully participate in their community and in society.
Scientists think of the impact of something as the difference between what did happen compared to what would have happened otherwise. For example, the impact of taking a tablet for a headache is the difference between how long it took to go away after taking the tablet (say, 30 minutes) and how long it would have taken without the tablet (2 hours). In this case, the impact (or benefit) of taking the tablet was to shorten your headache by an hour and a half. In technical terms, what would otherwise have happened is known as ‘the counterfactual’.
We can measure the impact of taking the tablet because we already have a pretty good sense of how long it takes a headache to go away on its own, or the counterfactual. Measuring impact is more difficult when we don’t already know the counterfactual. A process known as randomisation allows researchers to create two groups of people that are almost identical. This includes the mix of age and gender of the people in the trial, what other diseases or conditions they have, and often their income and social class. The close similarity of the two groups allows researchers to confidently say that any differences they see in the results is due to the thing they were testing and not because one group had more young people, or more lower income people.
In studies like DEMCOM, though, it is impossible to use randomisation. Likewise, exactly what ‘dementia friendly’ means in each community may be very different. One community might focus on improving access to shops and offices, whilst another concentrates on giving people more chances to socialise. The two communities are delivering different things, but each might make their citizens equally happy and well-off. Finally, each community will have some combination of ‘dementia friendly’ and ‘dementia unfriendly’ aspects. A community might have very good social programmes, but a poor transport network that makes it difficult for some people to attend. All these things make evaluating the impact of community-based interventions more difficult than evaluating drugs or medical interventions.
The DEMCOM study will have to have to imagine what a dementia ‘unfriendly’ community would look like, by working backwards from the ones in our study or by using things we already know for the country as a whole. Shops that have in place dementia aware services, for example, can reduce the stress of the weekly shop for people living with dementia, as they know they will have the time and space to shop without worrying that they will be annoying staff or delaying other customers. We can work backwards and assume that being more willing and able to do the weekly shop will let people continue to live at home longer. This improves the happiness and well-being of persons with dementia and their carers, and also saves money, by enabling people to be independent and not reliant on others.
This idea of working backwards and ‘imagining’ the counterfactual makes measuring of the impact of dementia friendly communities quite difficult. However, we feel that just because something is difficult to measure doesn’t mean we shouldn’t try. We already know that dementia friendly or dementia enabling communities are important in helping people to feel supported and live well with dementia. DEMCOM is looking at the resources needed to maximise peoples’ opportunities to live well and how that might be measured.
DEMCOM is a National Evaluation of Dementia Friendly Communities funded by the department of health. A 30 month project, it started on the 9th January 2017. To learn more about dementia friendly communities and receive updates on DEMCOM then visit our project page or follow us on twitter @DEMCOMstudy
Please see here for more information on the DEMCOM project