1. sitraMany of the pieces I write on dementia are about joining the dots, making connections between what different people are doing in various parts of the country, or even the world.

Never has this been more true than at a recent conference held by Sitra – a charity that promotes healthy, independent living – where I encountered a number of groups and individuals who, while they had diverse challenges, goals and jobs, shared values that are the common denominators of the very best dementia practice.

Take Shaun Webster, a charismatic grandfather from Yorkshire who, before the recent general election, worked with then Care Minister Norman Lamb and chief executive of NHS England, Simon Stevens, to improve opportunities for people with learning disabilities.

Asked in an interview about what pointers he would give the NHS boss on how to drive through change for people with learning disabilities, Shaun (who has learning disabilities himself) said, “You need to involve us at all levels to sort this out”. His approach reminds me of several people with dementia I know whose mantra is “Nothing about us without us”.

Erin Fahey, Shaun Webster, Jai Rae & Susan James of CHANGE

Erin Fahey, Shaun Webster, Jai Rae & Susan James of CHANGE

Shaun, just like his colleague Sarah James who also has learning disabilities, is (to coin a phrase) an expert by experience and at Sitra’s conference in London I saw the two of them in action with a couple of their co-workers from CHANGE, a Leeds-based human rights organisation led by disabled people.  Both are paid an equal salary and have equal status to their non-disabled peers.  

The quartet used drama to explore today’s attitudes to employment and to show how an inclusive, can-do, co-production and co-led approach ensures that the workplace is a more productive environment – for all concerned, not just those with learning disabilities.

How serendipitous then that on the very day I was writing this blog the Joseph Rowntree Foundation announced that in a ground-breaking project, over the past two years a panel of people with dementia has been advising it on its community grants applications.

Inclusion and co-production lay at the heart of another of the presentations at Sitra’s conference which, while spiced with variety, had at its core the principle of coming together in order to go from #strength2strength – our Twitter hashtag for the day.

Martin Simon advocates the asset-based approach to community development.

Martin Simon advocates the asset-based approach to community development.

As a pioneer of the co-production of public services, Martin Simon chose as the provocative title for his talk, “Do no more harm to communities in the name of helping them.”   He urged us instead to adopt an Asset-Based approach to Community Development (ABCD).

Martin says that with the ABCD approach, “Each person is recognised for the wealth of practical experience, insights, knowledge, skills and local connections that she or he brings to the table”.  It’s an inclusive way of living that involves asking, “What can I do to enhance what you do?”

A question that reminds me of numerous blogs I’ve written.   For in its asking lies the essence of what it is to be truly dementia friendly.  It is the very opposite of writing off people because they are in some way different from us and instead seeing them for who they are.

Jayne Goodrick & her husband Chris Roberts.

Jayne Goodrick & her husband Chris Roberts.

Chris Roberts, who has dementia, was at Sitra’s conference with his wife Jayne Goodrick.  “It is vital to build a relationship with a person with dementia in order to achieve good communication,” he said.

Suzy Webster, who lives with her two young daughters, her husband, father and 68-year-old mother, has spoken and written of the numerous difficulties and occasional joys of living with dementia (with which her mother was diagnosed a few years ago).

In conversation with dementia communication specialist Sarah Reed, Suzy told the conference about the ups and downs of her mum’s recent cataract operation.  She told us how the power of the Twitter community ensured that the operation, which was about to be delayed by several hours, took place on time (crucial for someone with dementia for whom changes in routine can be very disorientating) and that, despite the red tape, Suzy was allowed to be with her mum throughout, thus calming and comforting her.

Listening to the story I was struck by how different communities – be they on Twitter, within society, in shops, busses or hospitals – need to follow Martin Simon’s advice and ask how they can make things better for others.  Sometimes it seems that institutions, workplaces, transport systems and even hospitals set up bureaucratic barriers and obstacles where they should be pushing them out of the way to help people (whoever they might be) to travel as smoothly as possible to wherever it is they need to get.

Many other conference speakers demonstrated this principle in action – from Beba Parker of the Time to Change programme, which challenges the stigma and discrimination surrounding mental health, to Jimmy Carlson and Peter Yarwood whose powerful presentations revealed just what can be achieved when we focus on an individual’s strengths rather than his or her weaknesses.

All credit to Sitra and its indefatigable and witty chief executive Vic Rayner for bringing together a group of people who each in their various ways reminded us all to value each other for what we have to offer.


4. sitra