THE BLOG
17/11/2017 06:32 GMT | Updated 17/11/2017 06:32 GMT

A Marriage Of Learning Disabilities And Dementia

In health and social care, the word 'innovation' is bandied around far too regularly. What is often labelled as innovative is, in reality, a common-sense approach that has been discovered following costly and lengthy consultation exercises. But occasionally something is truly innovative, and I'm extremely proud to be part of one such project that has just been awarded 'Outstanding Dementia Care Innovation' at the National Dementia Care Awards 2017.

MacIntyre's Department of Health Funded Dementia Project is special for many reasons - the way people with learning disabilities have been continually included in the project from the outset, the sheer amount of work that's been completed since the project launched in March 2016 (testimony to abandoning endless consultation exercises and just getting on with it!), but mostly because the project has gone from being something that the learning disability 'world' welcomed and embraced to something that the dementia 'world' is REALLY taking notice of.

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The MacIntyre Dementia Project team picking up 'Outstanding Dementia Care Innovation' at the National Dementia Care Awards 2017 (Photo courtesy of MacIntyre)

I talk about 'worlds' because so much of health and social care exists in silos. Until this project, learning disability and dementia were rarely mentioned in the same sentence. Indeed, I recall supporting MacIntyre at the 2014 Alzheimer Europe conference when 'Dementia and Intellectual Disability' was on the programme for the first time.

Why is the dementia world suddenly taking notice? Partly because of the project's influence - in just the last few months, MacIntyre's Dementia Project have been partners in the Dementia Action Alliance 'Seldom Heard Groups' Campaign, supported knowledge and understanding of learning disabilities within Memory Services through The Royal College of Psychiatrists Memory Services National Accreditation Programme, and been a partner at Dementia Congress, running a stream of sessions specifically focused on learning disability and dementia where people who have a learning disability were teaching the professionals in the audience.

At one of those sessions, eminent dementia care expert Sally Knocker asked the project team what the dementia world could learn from the learning disability sector. Having worked with MacIntyre since 2013, and currently being the consultant for their Dementia Project, I have always maintained that dementia services could learn a huge amount from the learning disability sector.

In the good learning disability services that I've seen, people are supported, not cared for - an important distinction in relation to preserving independence, choice and control. In practice, that means every individual is seen as a person, not a task - something that sounds very simple but in reality often doesn't happen in traditional dementia services. Staff are recruited for their values, and trained to deliver person-centred, relationship-centred support as the norm, not an add-on. And the people being supported are enabled to do as much as they want to - staff don't see barriers and give up, they find a way.

Then there is the organisational culture - the outlook in learning disability services is forward thinking rather than playing catch up. MacIntyre engaged me four years ago because they realised that as the people they supported aged, so more of those individuals were developing dementia. They knew their expertise was in learning disability support, and wanted someone to bring a dementia perspective to their work. They had already begun their Dementia Special Interest Group, a regular meeting where staff from across the organisation talked anything and everything dementia related, and it is those foundations that the Dementia Project was built on.

Since 2013 I've often felt like a lone-voice in the dementia world, talking about learning disability services and receiving blank expressions in return, so nothing gives me greater pleasure than seeing so many others discovering the gem that is MacIntyre and being as impressed as I was four years ago.

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'Outstanding Dementia Care Innovation' - National Dementia Care Awards 2017

(Photo courtesy of MacIntyre)

Their recognition isn't just confined to the National Dementia Care Awards either - one of MacIntyre's Shared Lives Carers, Tina Dutton, who supports a lady living with a learning disability and dementia, recently won the Dementia Carer Award at the North West Great British Care Awards (with her colleague Will Black picking up a Frontline Leaders Award) and the weekend after Congress, one of MacIntyre's MK Support teams won the South East Great British Care Awards Palliative Care/End-of-Life Award.

I've worked with Tina and the MK team, and alongside the Dementia Project team they could not be more deserving of this success. But while the awards are fantastic and the celebrations well deserved, the greatest legacy from this autumn of public recognition will, I hope, be meaningful change on a far greater scale as the traditional dementia world wakes up to what we can all learn from MacIntyre.