Learning Paper

This paper outlines the key learning from 54 projects which have been supporting people with disabilities and mental health difficulties to move, usually from institutional settings, to live self-directed lives of their choosing in their local communities. This paper describes the implementation learning that has taken place; how this happens in practice; and the factors which lead to and support positive outcomes for the individuals. The paper draws on a significant body of data collected from these projects during on-site visits which included meetings with the project leads, key staff and the people being supported as well as family members, advocates and other allies.

The following characteristics have been identified as most strongly associated with good outcomes for the person and the organisation;

• Multi-level leadership - there should be ‘a champion’ at all levels of the organisation who supports and drives the move to a new way of supporting those using the service.
• Involving families and allies - needs to be done in a way that acknowledges their concerns, that considers how they want to be involved in supporting their family member and that considers the wishes of the person.
• Engaging and consulting with stakeholders - engagement should be future-focused on how different stakeholders are going to contribute to the new supports being developed.
• Staff skills and training - staff need to be trained/supported into these new ways of working.
• Readiness -the starting point should be that everyone is ready to move, with the emphasis on what supports needed to be put in place to ensure this happens safely and in a way that is designed by the person.
• It’s about more than housing - time should be built in for a process of really getting to know the person so that informed decisions can be made about accommodation options.
• Building strong and lasting relationships with the community - links with the community should be made in a very intentional and purposeful way for each person based on their abilities, contributions, wishes and needs.
• Start small and ‘model’ change - those involved act as ‘peer models’ for the process and the change involved. For those who will be moving, seeing their peer preparing and then successfully move, can give others encouragement that this is possible.
• Challenge of reconfiguration - in order to provide the supports for those who have moved, existing resources must be reconfigured so that the supports can move with the person.
• This takes time - to be done really well for each person, this process takes time.
• Focus on outcomes and monitor progress - progress can be greatly assisted by monitoring progress towards agreed outcomes.

This paper introduces, explains and describes the concept of dementia consortia by bringing together the experience and learning of dementia consortia established in Ireland to date. The aim is to illustrate how these groups can be established and to identify useful approaches and strategies so that a collaborative group can be as successful as possible.
This paper explores the learning of dementia consortia in Ireland to date, so that this form of integrated working can be developed further and highlights the following points;

• Bringing together the appropriate stakeholders to form a Dementia Consortium is only the first step in the journey towards meeting specific goals through successful collaboration.
• Dementia poses a multi-faceted challenge and the case is made that an ‘all of community’ response represents the most effective and sustainable way forward.
• There is a great variety of membership across individual consortia. This reflects the fact that they are locally developed in response to local factors such as perceived needs, existing services and service gaps, existing strengths and interests among community and voluntary groups.
• For a dementia consortium to run successfully, it is recommended that there is balanced representation across key groups.
• Each consortium had to dedicate time to establishing and building relationships, both within and outside of their groups. Dedicated time for the management of the projects had to be negotiated, and the groups had to ensure their aims and objectives were defined enough to keep them focused, yet flexible enough to allow them to utilise the skills and strengths of their group and their communities as they emerged.
• Though they face many of the same challenges, the consortia have evolved differently in their local areas, capitalising on their strengths and constantly reviewing their activities to ensure that they are working as effectively as possible.
   

This paper is part of a series of Learning Papers commissioned by Genio to explore learnings in practice on specific topics within Dementia. This paper results from a Dementia and Risk workshop, facilitated by Prof Charlotte Clarke and attended by representatives of HSE & Genio supported dementia projects. The purpose of this paper is to describe some of the current challenges of risk assessment and risk management in dementia care, illustrating some of the evidence base. The paper draws too on the contributions of participants in a Genio workshop in Dublin in May 2015.