Supporting people with dementia to live full lives in their community
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Social Purpose Organisation (SPO):
Living Well with Dementia Consortium
Living Well with Dementia
Venture Philanthropy Organisation (VPO):
SOCIAL CHALLENGE AND INNOVATIVE SOLUTION
Dementia is one of the most prevalent chronic illnesses in the world. According to the World Health Organisation (2015), 47.5m people have dementia worldwide. It is projected to almost triple to 135.5m by 2050. In Ireland it has been estimated that around 55,000 people were suffering from dementia in 2016. It is expected to reach over 94,000 by 2031 (M. Pierce, S. Cahill & E. O’Shea, 2013). Moreover, the cost of dementiacare has been estimated at €1.69bn per annum (Connolly et al, 2014). Therefore, providing the most cost-effective services is becoming an urgent priority for governments and social service systems.
This is why the Health Service Executive of Ireland (HSE) and Genio Dementia Programme was set up as a collaborative initiative across nine community sites in Ireland designed to address some of these challenges. An example is the Living Well with Dementia (LWwD) project based in a community in South Dublin. People with dementia, family carers, community members and professionals were all centrally involved in a consortium which developed a range of personalised support in the area.
For the first time, all these stakeholders had come together in the community to address dementia. They developed awareness, supportive environments and personalised support to enable people with dementia to remain in their own home, living full lives for as long as possible.
KEY SOCIAL IMPACT FIGURES
Number of people with dementia and families provided with personalised community supports
Number of people directly informed about dementia
VENTURE PHILANTHROPY CONTRIBUTION
How it started
In 2011 the Irish Government was developing the country’s first National Dementia Strategy. Genio worked in partnership with the Government agency responsible for the delivery of dementia services in Ireland, the Health Service Executive (HSE), as well as with the Atlantic Philanthropies to develop the HSE & Genio Dementia Programme.
Genio held a competitive grants round where applicants were invited to submit a proposal for a three-year project that would develop community-based support within their area. One of the key criteria was that the application had to be submitted from a local consortium of professionals and community members who had knowledge of dementia and/or interaction with people with dementia – e.g. medical professionals, retail staff, police officers, representatives from local sports clubs, carers, families and people with dementia themselves. The project also had to be sustainable beyond the lifetime of the three-year grant. Any learning and successful initiatives trialled and implemented by the project would need to be embedded and sustained within the community and/or health services.
The LWwD project was one of four projects chosen because it met all the application criteria to a high level and had innovative responses to the challenges in their area (South Dublin, Ireland). This community also had the highest prevalence of dementia (1.19%) in an urban area in Ireland at that time. In addition, the application demonstrated a robust consortium membership, including a track record of leadership, expertise in dementia and knowledge of the local community.
Site visits were conducted by Genio’s Dementia Programme Manager at least every quarter. The objectives of the visit were to collect data (quantitative and qualitative), solve problems, meet with consortium members and beneficiaries and ensure targets were being met. Genio worked with the project to address any challenges that the consortium was faced with.–Some examples include co-ordinating access to dementia experts to support development of evidence based practice and providing business consultants to create transition and sustainability plans with the consortium members.
Genio created a Learning Network with a number of learning components such as themed workshops, annual national conferences and communities of practice. All opportunities provided the projects with opportunity to share learning with peers, enhance their own learning from experts in the field of dementia and share their knowledge with a wider audience. The community of practice component, brought together all dementia projects to enable cross-project learning (nine in total 2012-2015),exploring shared challenges in a solution focused way. .
A defined grant of €700,000 for a three-year period allowed the project to test and develop innovative responses to supporting people with dementia in the community within the mainstream system but outside the confines of existing budgets. In effect, this grant acted as ‘bridging finance’, or temporary additional funding, to allow testing of new support options without interrupting existing day-to-day services. Many of the initiatives developed were absorbed into existing services at no additional cost as the project sought to sustain and embed the initiatives developed. Some initiatives did have a cost implication and these resources were financed at local level through mainstream services.
The learning from this three-year period then informed how the HSE could best respond and allocate resources into the future and successful initiatives from the project were seamlessly embedded.
Non-financial support at a glance
Access to networks
Management Team and CEO Support
Theory of change, Impact Strategy & Impact Measurement
Awareness raising in the community to enable a dementia friendly environment
Number of people who directly received information about dementia
2,800 people received information directly
Training & education for people with dementia & their families and for staff & volunteers
Number of people who received training/education
Almost 300 people with dementia & family members attended support group and/or training, which heightened their skills and knowledge
200 staff & volunteers took part in training, increasing their knowledge and confident engagement
Development of personalised supports in the community
Numbers of people with dementia and families in receipt of personalised, community based supports
360 people with dementia and/or families received personalised support from the project enabling them to live fuller lives at home in their community
Education & promotion of assistive technology
Numbers of people introduced to assistive technology options
Increased engagement with assistive technology to enable people with dementia to remain living at home
Ongoing access to assistive technology options
Over 100 family carers & healthcare staff attended an exhibition where they were informed of and sampled a vast range of assistive technology.
Seven families availed of assistive technology packages
The following activities also supported the accomplishment of above results:
Development of a website (livingwellwithdementia.ie)
Development and dissemination of supporting literature
Creation of an assistive technology library, The Memory Harbour, within a local hospital where people can visit and sample devices on an ongoing basis
What they say
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Désirée O’Rourke – sister of Sheila who lives with dementia
“The Living Well with Dementia project is the best run and best targeted programme that I have ever come across. I have no doubt that Sheila would be in a (nursing) home now without their support. It is a very uplifting organisation, practical, caring of both the person with dementia and the carers. I have always felt supported and understood. I could not speak more highly of the project and the personnel. It provides a quality of service way beyond my expectation.”
“Genio’s team instilled a confidence and trust in me which I had not experienced in my previous forty years in my health care work. They provided a framework and tools which allowed me to lead this project with confidence to its successful conclusion with the learning from it now embedded in services and supports for people living with dementia in this region. The on-going feedback, education, learning and research which Genio’s team provided was invaluable throughout the project.”
Eilis Hession, Project Lead – Living Well with Dementia
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Elaine Howard, Dementia Programme Manager, Genio
“The Living Well with Dementia project is an example of the potential that can be achieved when passionate leaders come together with a shared vision to bring about change. This project positively changed the infrastructure that existed within this community for people living with dementia, with plans underway to scale this personalised approach to a further 7 surrounding communities, and beyond.”
The initiatives developed by the project have been sustained and are now being offered to the wider surrounding communities in South Dublin. Between January and June 2017 a further 145 people have accessed the services provided by LWWD. A Dementia Development Co-ordinator is in post, leading on the promotion of a personalised support response for people with dementia.