Sustaining community-based interventions for people affected by dementia long term: the SCI-Dem realist review

Abstract

ObjectivesCommunity-based support for people with earlier-stage dementia and their care partners, such as regularly meeting groups and activities, can play an important part in postdiagnostic care. Typically delivered piecemeal in the UK, by a variety of agencies with inconsistent funding, provision is fragmented and many such interventions struggle to continue after only a short start-up period. This realist review investigates what can promote or hinder such interventions in being able to sustain long term.MethodsKey sources of evidence were gathered using formal searches of electronic databases and grey literature, together with informal search methods such as citation tracking. No restrictions were made on article type or study design; only data pertaining to regularly meeting, ongoing, community-based interventions were included. Data were extracted, assessed, organised and synthesised and a realist logic of analysis applied to trace context–mechanism–outcome configurations as part an overall programme theory. Consultation with stakeholders, involved with a variety of such interventions, informed this process throughout.ResultsAbility to continually get and keep members; staff and volunteers; the support of other services and organisations; and funding/income were found to be critical, with multiple mechanisms feeding into these suboutcomes, sensitive to context. These included an emphasis on socialising and person-centredness; lowering stigma and logistical barriers; providing support and recognition for personnel; networking, raising awareness and sharing with other organisations, while avoiding conflict; and skilled financial planning and management.ConclusionsThis review presents a theoretical model of what is involved in the long-term sustainability of community-based interventions. Alongside the need for longer-term funding and skilled financial management, key factors include the need for stigma-free, person-centred provision, sensitive to members’ diversity and social needs, as well as the need for a robust support network including the local community, health and care services. Challenges were especially acute for small scale and rural groups.

What matters in development and sustainment of community dementia friendly initiatives and why? A realist multiple case study

“…Table 3 shows an overview of the MRPTs and associated levels of change. support previous research about the development and sustainment of complex interventions in dementia community care, which con rms the importance of a support base (5,8,39), collaboration by diverse partners (8, 39, 40) and an understanding of pre-requisites for participating in initiatives (8, 39, 40). Moreover, our results highlight how contextual aspects such as diversity among partners and insight into issues in the community, as well as mechanisms such as sharing of resources and reciprocity of interests, provoke feelings of importance, connection and encouragement among all community members.…”

Sustainability of locally driven centres for those affected by dementia: a protocol for the get real with meeting centres realist evaluation

“…Interview schedules were developed and piloted with stakeholder input and can be found in online supplemental file 1. The development of these were guided in part by the factors involved in the sustainability of community-based interventions found in the SCI-Dem Realist Review19 20 (summarised in online supplemental file 2) but also a modified SSM ‘BATWOE’ structure as outline in table 2.…”

“…Data from all work packages, categorised and organised as themes, will be further analysed using the same Realist logic of analysis35 as the SCI-Dem Realist Review,19 20 to develop a Realist programme theory. This second stage of analysis is needed to understand causation—that is, how differing contexts in different MCs trigger different mechanisms (the hidden causal processes within people and organisations) to cause desired or undesired outcomes.…”

“…However, they face a variety of challenges in sustaining long-term. These challenges and how to meet them are much talked about in the dementia care policy, rhetoric and practice arenas but have received very little research attention, as identified in the SCI-Dem review (2018–2020) 19 20. This research also showed many community initiatives are not sustained beyond 1–2 years.…”

Factors influencing the sustainability of a community health volunteer programme — A scoping review

“…Choosing CHVs from among individuals already established in the community for volunteering services increases the level of trust that the community has in the volunteers. This trust would enable the CHV network to establish a strong bond between the community and the health team, which might in turn enhance the accountability and sustainability of the programme [25,[27][28][29]42,44,45].…”