Sustainable Community Interventions for people affected by Dementia: What works, for whom, and in what circumstances?

On a rather warm July afternoon, Thomas Morton took around 40 of us through the Alzheimer’s Society-funded SCI-Dem project which he has been working on for the past 18 months.

Why was the SCI-Dem project needed?

As Thomas informed us, social isolation, loneliness and stigma are widespread issues for people living with dementia and their families. These factors can have a significant impact on both mental and physical health. Community-based support such as regular groups and activities can play an important part in combating social isolation, maintaining positive self-image, delaying decline and delaying hospitalisation. However, provision can often be fragmented and piecemeal, and many interventions find they are unable to continue due to inconsistent funding.

The focus of the SCI-Dem research was to investigate what can promote or hinder community interventions being sustainable over time. The aim is to report on how to best implement community-based interventions so that they are sustainable, with best practice being shared through tips and recommendations for those in practice and for policy makers, and through creating accessible publications and online materials for people to use.

While the research began before the Coronavirus situation, its findings are perhaps even more important and relevant as a result of the impact of the pandemic on the types of groups and interventions being considered.

A realist review – what is it?

This research is a realist review, a kind of literature review based on a realist approach. A realist approach looks at causes and effects to identify what is happening in different situations to achieve particular outcomes. For SCI-Dem, data was gathered and synthesised from existing literature rather than conducting research ‘on the ground’ so to speak. This isn’t to say that it’s all been desk-based work, as engaging with stakeholders has been an important factor throughout the research to ensure that the findings are based in practice.

The review identified 123 potential articles through formal and informal search methods. These were whittled down to 61 articles that were assessed to be of sufficient rigour following an initial round of analysis and coding. Following further, more detailed analysis, several key factors or ‘causal systems’ were identified.

So what factors affect the sustainability of community-based groups and activities?

Although the diagram Thomas shared with us looked quite complicated at first glance, it very cleverly showed how the main factors related to the getting and keeping of members, staff and volunteers, funding and income, and the support of other organisations. For each of these, several specific aspects were identified as being important to those main factors, such as the offer of an interesting activity helping to attract members, and staff/volunteer retention being affected by how valued they feel.

But, the whole point of the review was to identify how these findings can be put into practice, so Thomas talked us through a couple of examples in detail and others at a higher level.

One of the factors to consider when trying to attract members for your intervention is emphasis the social aspects of the intervention, including food and refreshments, to widen its appeal. Examples of the supporting data for this are shown in the picture below. As Thomas discussed, in simple terms, if you focus too much on the activity alone it can put people off, whereas they may be more inclined to attend for the social aspect even if they are less interested in the activity itself.

During his talk, Thomas acknowledged that it can be easy to say some of the recommendations, but actually it is worth remembering that they are based on a significant body of evidence, indicating that they are valuable aspects to focus on which could have an impact on the sustainability of an intervention.

Further high-level recommendations for the other key factors are shown below.

So what next?

The SCI-Dem work is due to end in December 2020, and in the remaining time the aim is to make these recommendations available in different formats for different audience to help them actually be implemented in practice. Watch this space!

During discussions, Thomas highlighted that the SCI-Dem research has been specifically looking at groups and interventions based on meeting face-to-face. However, with the uptake of virtual and online groups as a result of Coronavirus, he is hoping to be able to look at the role of virtual groups in the future if funding can be secured to take the work further.

If you would like to get in touch with Thomas regarding SCI-Dem, he can be contacted via t.morton@worc.ac.uk or on Twitter @ThomasMortonADS

You can also access a recording of the session here.

Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow