Looking into how community groups and schemes can be sustainable, with SCI-Dem

With 2019 now well underway, so is a new project for ADS: SCI-Dem – Sustainable Community Interventions for People Living with Dementia, an 18-month review looking at the nuts and bolts of how various community groups and schemes to support people with dementia can be run successfully and sustainably. Research Associate Thomas Morton explains:

Personally, this January, it has very much been a case of “new year, new me”. No, I haven’t taken up yoga or given up smoking, I did that in 2016 (the quitting smoking, not the yoga), but I have started work on a fresh project for ADS, having only joined the department just before Christmas, to do just that. Senior Research Fellow Teresa Atkinson and I are in the process of firming up and nailing down a plan of action for what is known as a ‘realist review’ (a specific method for scouring all the data out there on particular topic), in order to develop what is called a ‘programme theory’ (a kind of broad model of how things can work under different circumstances).

We are doing this in regards to sustainable community interventions, which is a posh way of saying any kind of community-based club, group, activity, scheme or initiative that brings together people with dementia – along with the people who care for and support them – on a regular and ongoing basis. Such initiatives could take various forms, from Meeting Centres of the kind that ADS has been instrumental in piloting in the UK, to weekly gardening groups or regular days of fun, socialising and cognitive stimulation at day centres.

Our emphasis is strictly on the regular, frequent and community-based; we’re focussing on schemes where people meet physically at least once a week for at least a morning or afternoon, schemes that cater for people who live in the community, at home or in extra-care housing, and we are specifically interested in schemes that aim to be constant and ongoing rather than courses or programmes that only run for a few weeks or months.

The reason this is important to look at is because there is often a gap in the provision of such regular sustainable community schemes – of the kind that are always there and easily to access for the general public. These provide a much-needed way for people with dementia, their friends and families to socialise, let off steam, engage in fun and meaningful activities, and share information and experiences. There is a demand for such community activity. People enjoy attending and there is evidence it can be beneficial to people with dementia, yet they can be difficult to get up and running. It can be challenging to reach the right people and to convince some of them to come along and give it a try. It can be challenging to retain members and volunteers, especially if things aren’t done right or well initially, or funding is thin on the ground (or non-existent). It can be challenging to keep such schemes going week after week, especially if the honeymoon enthusiasm of some who helped set them up dies down, with other, newer projects vying for their attention.

These are just some of the issues we expect to find and put under the microscope in this review. It will involve trawling through vast amounts of research papers, digging out key policy and planning documents, and meeting with various stakeholders who have been involved with such community groups and schemes, for their input, perspectives and guidance. With funding already in place from the Alzheimer’s Society, a lot of the groundwork for this project has already been laid by colleagues before me, for which I am very grateful. It is now our task to make good on that and deliver an exemplary piece of ‘realist’ research in line with that vision.

For those of you interested in the progress of this project, I have started a separate blog for SCI-Dem here. And with that, I bid you a slightly belated Happy New Year. May 2019 be an auspicious, insightful and productive one!