On 25th June, my colleague, Lewis Veale, and I attended the Alzheimer’s Society Isle of Man’s International Dementia Conference at Mount Murray, Santon, Isle of Man, which was proudly sponsored by PDMS. 1300 people are currently estimated to be living with dementia on the Isle of Man. This conference brought together professionals, carers, and speakers from the Island, the UK, and beyond to consider the most innovative, constructive approaches to dementia care. The themes of the day resonated with not only improving care for people living with dementia but with transforming health and social care for all service users into a holistic person-centred approach.
Starting the Day
The day began as most conferences do with a keynote. By way of audio clip, Manx-born Samantha Barks of Broadway fame championed the fantastic initiatives by the Alzheimer’s Society ranging from assistive technology to support services to research into prevention and treatments. In another introductory address, Professor Alistair Burns of the University of Manchester was the first to touch upon the theme of the day. According to recipients of an integrated care programme in Cambridgeshire, “it’s great to be treated as a whole person”.
The morning was energised through a participatory taster session of Singing for the Brain, volunteers leading singing and vocal engagement for people living with dementia who attend day programmes throughout the Island. Following chair exercises and vocal warmups for some regular programme participants, the entire room joined into renditions of popular nursery rhymes and songs such as The Sound of Music’s ‘Edelweiss’ to encourage gentle reminiscing. Lewis and I agreed that more conferences should include communal singing sessions.
Representatives of the Isle of Man’s Integrated Care Project in the West outlined their efforts and plans to metamorphose how service users are viewed and their care provided by health and social care practitioners. Drawing upon successful models and practices from the UK and beyond, Project Lead Paul Jackson and colleagues explained how they aim to upgrade healthcare in Peel. The central aim is to facilitate a joined-up approach to a person’s care such that a team of professionals across services work together to provide care for the individual, which may seem logical, but has been more difficult in practice.
So far, they have formed the Western Wellbeing Partnership from among the 129 service providers for Peel, rebuilt the referral process from the ground up, consolidating nearly 100 introductory questions into a single 17 question form to be used across services, and are planning to repurpose a community centre in Peel into the Western Wellbeing Centre, which will allow the public to directly access advice, support, and assessments. Practitioners say that being involved in the project has allowed them to form new and stronger working relationships with other professionals and to more quickly access support for people with complex needs.
These developments are promising and the aim is to expand the integration project beyond Peel dependent on the research outcomes of the Peel pilot, which would benefit not only those living with dementia but everyone on the Island seeking health or social care.
Later on, Professor Claire Goodman of the University of Herefordshire explored ‘What makes good dementia-friendly initiatives in healthcare?’ Praising Laxey’s efforts to become a ‘dementia-friendly’ village, she noted that the foundations of successful initiatives rest upon inclusion, participation, and respect. From a social justice perspective, an individual has the right to not be excluded, which becomes more difficult to achieve when considering that 20% of people living with dementia have additional serious health conditions. Another key to success is to require the active participation of people living with dementia from formation stages of an initiative and beyond.
Professor Goodman highlighted a dementia passport initiative in a community in which all bus drivers were appropriately trained to support people living with dementia travel locally, allowing people living with dementia to be more independent safely. Further research shows that the UK Government includes transportation to be a linchpin of the UK’s mission to become the ‘best country in the world for people living with dementia’.
As a technology company, we could also do more to involve end-users with additional needs in the development and testing of our public-facing systems. PDMS’ developers and designers keep accessibility in mind throughout the software development process, but we could and should grow in the direction of forming focus groups for people using assistive technology to try out our websites and business systems. According to a recent Medium article, one cannot anticipate a user’s needs if they do not ask the users themselves.
First Point Community Portal
A presentation on the First Point Community Portal, PDMS’ effort to support the independence of people living with dementia and others with additional needs, concluded the day’s events. Now in its post-pilot phase, the system assures over 70 registered individuals that, if they were to ever encounter the emergency services, their needs would be known earlier and that their loved ones would be contacted sooner because of the portal.
Anyone living on the Isle of Man who needs extra assurance could store their details on our secure, password-protected, website; family members can help a loved one sign up with their consent or a person can approach one of the project’s charity partners for help including the Alzheimer’s Society Isle of Man. Only a name and email address are required to sign up. A person can always choose to provide more information that they would want the emergency services to be aware of just in case. Then, in an emergency, the police or joint control room will be able to figure out who they are, what they need, and who to call.
First Point was developed in partnership with the Alzheimer’s Society Isle of Man, Live at Home, the Manx Blind Welfare Society, and the Manx Deaf Society plus the Isle of Man Constabulary, Isle of Man Emergency Services Joint Control Room, and Isle of Man Fire and Rescue Service to provide a person-centric solution that would provide peace of mind to people with additional needs and their loved ones.
By all counts, Alzheimer’s Society Isle of Man’s first dementia conference was considered a success by all involved. The organisers even fulfilled the criteria set by the presenters themselves for a top initiative, bringing together practitioners and professionals as well as including people living with dementia throughout the day. PDMS thanks the Alzheimer’s Society Isle of Man for the opportunity to so thoroughly participate and would be honoured to be involved in their next dementia conference on the Island.