Sustainable Community Interventions for People Living with Dementia (SCI-Dem)
The Association for Dementia Studies was awarded funding from the Alzheimer's Society for this project, which ran from December 2018 to December 2020. SCI-Dem was a realist review, that aimed to gather together data on the cause-and-effect factors involved in keeping community-based groups and activities for people affected by dementia going long-term – in a climate where such groups and activities often lack any formal support and are often forced to stop after only a short run.
What makes a community intervention for people affected by dementia sustainable: in what circumstances and why?
In the context of this project the word ‘community’ was taken to mean people living at home or in housing schemes, as opposed to those in care-homes or hospitals. ‘Interventions’ referred to those activities which:
- Are seen to be of benefit to the quality of life of people with dementia and family/informal carers – beyond simple sign-posting and information-giving, and beyond occasional respite care
- Occur on a regular, ongoing basis, usually for at least half a day or more per week
- Are place-based, i.e. bringing people together physically, somewhere other than at home
- Are targeted towards, and attractive to, people with dementia and those that support them
‘Sustainable’ interventions were considered to be those that had been in continuous existence for two years or more.
There are currently significant gaps and inconsistencies in the support on offer to help people adjust, connect with others, access services and continue to live well, following a diagnosis of dementia. Community-based groups or activities can be a key form of support. However, these often struggle to keep going long-term once they have started.
SCI-Dem (Sustainable Community Interventions for people affected by Dementia) has gathered together information about the common problems that face regularly-meeting groups in keeping going. This review primarily aims to share strategies and good practices for those running a community group or activity, but our data has also revealed information that might be useful and informative to those commissioning services or shaping policy.
Data was gathered and put together from dozens of sources of all types: research studies and papers, evaluation reports, magazine articles, info guides and how-to booklets, conference talks, even videos and artistic output from some groups. A theoretical model (programme theory) was then constructed encompassing dozens of identified cause-and-effect factors in the form of statements about how different contexts (background circumstances) were likely to trigger different mechanisms (processes and responses in people and organizations) to produce different sustainability-influencing outcomes.
Key factors were grouped under the categories of Getting and Keeping Members; Getting and Keeping Staff and Volunteers; Getting and Keeping Support and Organisations; and Getting and Keeping Funding/Income. The theory produced from the SCI-Dem review is being used to inform, and will be tested by, the current Get Real with Meeting Centres realist evaluation.
We have produced three booklets aimed at different audiences that outline what was found in the SCI-Dem review, which can be downloaded here:
Keeping community groups and activities going: Recommendations for practice from the SCI-Dem Project
Sustaining community groups and activities for people affected by dementia: Recommendations from the SCI-Dem Project for commissioners and policy-makers
Helping your community group or activity club to keep going strong: Suggestions for members of groups and clubs from the SCI-Dem Review
A published protocol for the SCI-Dem review can be found here.
A main results paper for the SCI-Dem project can be found here.
SCI-Dem project blog
A regular blog about how the review was carried out was kept for the duration of the project and can be found here. (Note: This blog has now been extended to include the new Get Real with Meeting Centres project that SCI-Dem fed into, so latest posts relate to that).
For more information on SCI-Dem contact: