Sustaining community groups and activities for people affected by dementia: Recommendations from the SCI-Dem Project for commissioners and policy-makers

Supporting people with dementia and their carers to live as well as possible in their own homes is a public health goal internationally, but also one of the greatest healthcare challenges we face. More than 850,000 people in the UK currently live with the condition, a number forecast to double to by 2040. 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 diagnosis.
Community-based groups or activities for people affected by dementia can be a key form of support. However, these often struggle to keep going long-term once they have started. Policy and commissioning can play a significant role in creating a more favourable climate in which such groups and activities can sustain and flourish (and in turn, of course, groups can play role in patient and public involvement in planning and commissioning).
The SCI-Dem (Sustainable Community Interventions for people affected by Dementia) review 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.
This booklet outlines a summary of this information in the form of recommendations for commissioners, funders and policy-makers. A more in-depth report on the SCI-Dem review as a whole will be available (see p.9).The data these recommendations are based upon 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.
We hope that what we have found is of interest and provides something useful and informative when considering decisions on how to encourage community-based groups and activities that support people affected by dementia - and help them to keep going long-term.