How can civil society organisations and communities enable the wellbeing and citizenship of people with dementia?

The Centre for Citizenship and Community provides excellent support for policy, research, learning and local practice in community engagement and social inclusion using a connected communities approach underpinned by principles of co-production. Its priority activity areas are Health and Social Care but its interests extend across all areas of public services.

The first of a new series of Centre for Citizenship and Community seminars, linked to the areas of policy in which the Centre is engaged, was held on 27 November 2013. Hosted by RSPH at their Portland Place offices in London 2013, the theme of the seminar was dementia.

The seminar aimed to provide an opportunity for participants to be informed about the Centre's dementia related work and to provide for the contribution of expertise and shared learning in this priority area for policy and practice.

The Centre's work programmes of particular relevance to dementia include:
a) The Dementia Friendly Cities programme, being run in conjunction with the UK Healthy Cities Network (which is co-ordinated at UCLan),
b) the role of the Centre as part of the Dementia Friendly Communities initiative led by the Alzheimer’s Society,
c) the Dementia Champions Group, established to deliver the PM’s ‘Dementia Challenge’; and
d) the Centre's leadership on behalf of the Champions Group of a task group on the role of civil society and the voluntary sector in relation to dementia friendly communities.

The seminar’s delegates represented a range of organisations with a concern for a social approach to dementia and with a specific interest in questions concerning of the part that communities play in enabling the wellbeing and inclusion of people with dementia as citizens.

Delegates were welcomed to the event by Shirley Cramer, Chief Executive, RSPH and David Morris, Director, Centre for Citizenship and Community, UCLan, FRSA.

The seminar was opened by Catherine Wilton, Acting Director of the Connected Communities programme at RSA, the Centre's key partner, with whom it is working on the Connected Communities programme. Catherine outlined the Connected Communities model and explored possibilities for its application in dementia.

Karishma Chandaria of the Alzheimer’s Society then outlined the Dementia Friendly Communities programme of the Society, describing its range of partners and, in particular the extent of business support for the initiative.

David Morris with Zoe Robinson, Centre Associate, presented a preliminary review of initial findings from the Centre’s Dementia Friendly Cities programme.

Stephen Woods, Co-ordinator, UK Healthy Cities Network at UCLan discussed the city wide challenge approach to Dementia.

Douglas Inchbold, Public Health Development Manager, presented a profile of the Manchester Supporting Health Dementia Programme featuring:
  • dementia nurse in local communities,
  • working with GPs on dementia awareness, supporting management of dementia, improving access to Health Trainers and better support for carers,
  • developed integrated care for LTCs,
  • dementia pathways as standard, with risks linked to pathways; and
  • working with housing associations, police, fire stations, dentists, shops and other commercial organisations.
He also discussed a proposal to work with the Centre for Citizenship and Community in a project to promote social network development within 2 wards – Cheetham and Crumpsall as part of new care pathway model based on realising community assets.

Group discussions
These were focused on identifying and discussing the evidence and experience of good practice, guided by three questions:
  • How do we understand citizen roles in dementia?
  • How is citizenship to be enhanced through better use of social and community network connections - what needs to happen at community level?
  • Shifting organisational culture - what do organisations need to do?
Good Practice identified
Health and social care integration: gathering progress on health and social care integration is likely to be beneficial in relation to dementia as evidenced by local experience such as that in Bolton.

'Staying well' Workers in GP practices – offer holistic assessment and then work on a social prescribing model; the importance that this programme places on social connection rather than intervention has obvious relevance in dementia.
Availability of key information: of particular importance for families and carers.

This led to further collective discussion on the barriers to a more comprehensive community- oriented approach with the scope to challenge pre-conceived and stigmatising notions of dementia and promote instead, the values of inclusion and individual citizen-based contribution. Barriers include:
 
  • The impact of insufficient approaches to evaluation: methodology is needed for evaluating participatively the benefits of social networks for people with dementia and their carers. The potential of short term real evaluation and social action research approaches involving case study methods were highlighted as a way of meeting the growing need for local evidence.
  • Community Development approaches are felt to be insufficiently 'dementia - friendly'. This could be redressed by: 
    • Commissioning to support communities and their assets
    • Effective cost modelling of preventative approaches
    • Evaluation models that make sense for community development activity
    • Review of evidence of community development with relevance in dementia.

Seminar summary

The seminar was felt to have: 
  • familiarised participants with the Centre for Citizenship and Community, including the work of RSPH and RSA and with Connected Communities method and approach,
  • offered a forum for the exchange of expert experience and knowledge,
  • enabled the airing of fresh perspectives on innovation and emergent approaches to practice, contributed to strategic work of National Champions Group - possibility for participating organisations to share future learning in dementia; and
  • provided information on the Healthy Cities and Alzheimer’s Society work