The implementation of personalised supports for people with dementia through multi-stakeholder, integrated care networks

Abstract

Introduction: It is estimated that 55,000 people have dementia in Ireland. This is projected to increase significantly in Ireland and globally. People with dementia (PWD) have a wide range of health, social, psychological, emotional and other needs which change over time, therefore many health and social care professionals from different settings can be involved in their care. Many PWD wish to remain living at home for as long as possible and maintaining personhood and social connection is key to the person living well with dementia. Resource constraints, gaps in community-based services and a fragmented health and social care system presents a significant challenge to meet the variety of needs of people with dementia in a personalised, responsive way. Policy context and objective of initiative: Ireland’s National Dementia Strategy recognises these challenges and proposes an integrated partnership approach to the development and delivery of services for PWD including all stakeholders in providing a range of person-centred, flexible and responsive services. The HSE & Genio Dementia Programme is a collaborative initiative whose objective is to develop innovative, integrated and personalised services and supports for PWD in their local community so that they can remain living well at home. The target population was PWD, including early onset dementia, family carers as well as the wider health and social care ecosystem. Highlights: The mechanism used to address the integration of services was a Dementia Consortium. This is a locally based, multi-stakeholder group of organisations and individuals who brought together varied expertise and resources to develop innovative and personalised supports to enable PWD to live well at home. Consortia included people with dementia, family carers, health and social care professionals, other statutory organisations, voluntary and community groups, hospitals, nursing homes and others. Nine Dementia Consortia, with 160 members developed a range of personalised supports for PWD and carers to maintain ability and connection, including respite supports and assistive technology (AT). To date, over 74,000 hours of personalised supports have been provided to 1,474 PWD plus carers. Learning points to the need for supports to be responsive and flexible; the importance of timely engagement with the person and carer and the usefulness of tailoring supports to the person and their interests. Evaluation findings indicate a greater degree of integrated working and that personalised supports enable PWD to remain living at home for longer, resulting in significant cost avoidance. Transferability: A Dementia Consortium builds on what is locally available and is an easily localised and transferable model. The learning from this programme is now supporting a further four sites to develop integrated working, with a focus on implementing Intensive Home Care Packages for PWD. Conclusions: This programme has demonstrated that multi-stakeholder consortia are a useful mechanism for supporting a profound change in the development and delivery of dementia services, enabling the central involvement of people with dementia and family carers, a focus on personhood through personalised supports and meaningful integration across a wide range of stakeholders.