Time for Action, not just awareness!

I’m so glad that Dementia Awareness Week has changed its name this year to Dementia Action Week! While awareness is an essential foundation for change, in my view it’s high time we had more action. At Innovations in Dementia, we prioritise action-based projects which will have a real practical benefit for people who are living with dementia.

The Getting Along programme, designed by Damian Murphy, is a great example of taking a recognised ‘issue’ and turning it into action. This ground-breaking approach helps couples and families to avoid the many traps that dementia sets within relationships. The formal programmes for couples and families, as well as the training and facilitation courses for staff, equip learners to improve and balance issues in the relationship. Practical actions which can have a massive impact – and may indeed save a marriage.

Our Accessibility work strand is also highly practical. We have co-produced checklists to enable groups of people living with dementia to audit both outdoor and indoor public spaces. The DEEP network has produced a guide to accessible information. And my colleague Steve Milton also leads a service called ‘Crystal Clear’, which can help you to create information that is ‘not just easier for people with dementia to use – but easier and more enjoyable for everyone to use and understand’.

In contrast, ‘Rights’ may sound very abstract and high level… but again we have tried to bring them down to grassroots so that they are made real – and embodied in action. Our booklet ‘Our Dementia, Our Rights’ is the first written by, with and for people with dementia themselves – and it offers very practical information as to how to use rights in real life. Our Shadow Report to the UN Committee on the Convention on the Rights of Persons with Disabilities contains many real-life examples of rights breaches which call for practical action. (And we didn’t just write it – we supported Keith Oliver to physically take it to Geneva to ensure it really did reach the Committee!). Our recent Yorkshire project ‘Our Right to Get Out and About’ has also supported several DEEP groups to take practical action – including setting up petitions, writing letters, making iPhone films, and designing a huge banner –  to highlight very tangible injustices associated with parking and travelling.

Too often we hear about the importance of involving people with dementia – only to realise this is at best lip service. To do this properly you have to walk the walk – you have to take action. Dementia Diaries is one example of involvement – it’s an innovative project which uses audio diaries to bring us a wide range of voices of people living with dementia. The brainchild of On Our Radar, Dementia Diaries has now been integrated into DEEP. Rachel Niblock and myself support people with dementia as ‘reporters’. They can use a landline, a mobile, emails or an OwnFone at any time to file their reports – which range from the very personal to the very political! The project has huge potential to educate, to challenge attitudes, to connect and to motivate.

With the Dementia Words Matter Call to Action we again recognised that it was going to take collective action to fundamentally change the choice of words that are used to describe dementia and its day to day experiences. DEEP and the Dementia Action Alliance (DAA) joined forces to produce a film, some guidelines, an infographic and posters – as well as a Twitter campaign #dementiawords.

There are many more examples I could give you – but I hope that these few illustrate what we believe about Action. We believe it’s got to be walk not talk. We believe it’s got to be with not for. We believe it’s got to be rights-based not paternalistic. We believe it’s got to start with the person not the service. And we believe we’ve got to get on with it.

So let’s crack on, as they say in my part of the world!

Philly Hare

Coming home

iD blog 1, Damian Murphy, April 2018

I have just spent about 18 months as a director of Innovations in Dementia (iD). iD has just completed 10 years – of doing what it says on the tin. I wasn’t there at the beginning. Instead I was searching for the right fit. Coming to Innovations has been like coming home.

This, however, is not meant to be a self-indulgent iD love in. Instead I want to share some of the questions, experiences and reflections I’ve had over the years in my journey that have brought me to where I am today.

I spent some time in community in Mexico and Honduras working, laughing, crying, living alongside young people with a disability, many from situations of abandon, marginalised in a predominantly ‘machista’ society. So, I was working with people with a cognitive impairment on the margins of society, seen as a burden, and measured and labelled in terms of what they can’t do – No change there then! 20 years later I’m doing the same.

The Spanish word most often used to describe the people I lived with was ‘minusvalidos’ – it literally means ‘Worth Less,’ revealing a societal attitude that required a counter cultural approach. Let’s not kid ourselves that this is a problem of so-called less developed countries because 20 years later my aim now (as it was then) is to celebrate the fantastic contribution individuals can make within their close relationships, within their communities and society at large; to highlight the gifts, potential and rights of people to belong, to grow regardless of any label.

Daily contact and living full time with and alongside this marginalised group fuelled the message we wanted to share. Back in the UK my nurse training spoke of Normalisation and Unconditional Positive Regard; of Professional Boundaries, when the people I met were just asking ‘Will you be my friend?’ Work in dementia involves a daily human encounter that too often we are pressured to ignore.

My first job in dementia was as an independent hospital-based advocate for inpatients living with dementia. I was accused of ‘feeding people on Nil By Mouth’ in my first weeks*; I was called by consultants asking me to ‘get rid of my demented patients;’ and came across countless entries in peoples’ notes ‘For placement’ (to a home) when the patient themselves hadn’t even been consulted. Things are improving now but it was because people were not fuelling their system with real contact and engagement with people with dementia experiencing the impact of hospitalisation. (*I didn’t give any food to people on Nil By Mouth, in case you were wondering!)

I remember running a carers information programme in Lincolnshire – and was stunned to receive a letter from Richard, a gentleman with dementia whose wife was on the course, demanding he have the right to attend or to receive similar input. – It was the start of a Forum for people with dementia, which we enjoyed calling the Stirrers’ group. (would have made a great DEEP group!) That fuelled so much of my work and I grew ever more uncomfortable with my one-sided job title ‘Carers’ Support Coordinator’.

Training was my thing and I joined the Alzheimer’s Society education and development team.  I remember on my very first day feeling completely cut off from the reality of life of people living with dementia in community. My fuel tank would soon run dry.

I even spent time working within the long term care sector. Surely contact with real people would fuel my work again. The clear messages that people gave through their words actions and through my observations was largely unheeded. Tokenistic involvement at best prevailed in residents’ ‘committees’ within an environment too often focussing on risk aversion and a perverted idea of the meaning of security (security of locked doors over the security engendered amongst residents of feeling ‘at home’). Within a large organisation nowhere near ready to EMBRACE any sort of inclusion, I was deluding myself I was making a difference.

A colleague and I reflected recently on what might be behind the internal gatekeeping that many people possess. ‘OK I’m all for inclusion, but not really sure that person has much to offer, or this person is really capable of contributing’ – Is that the voice in your head? I have to be honest it has often spoken to me, but I knew I needed to re-focus on the real lives of people living with dementia. I helped set up York Minds and Voices, now an established group of peers within DEEP the uk network of Dementia Voices. The more time I have spent with people with dementia that internal gatekeeper has shut up!

I still encounter people who are surprised at the contribution that people with dementia can make; and they wonder how it can be done, but if you don’t immerse yourself you won’t realise how easy it is. You will see problems and inconvenience (that internal gatekeeper) and feel a heavy burden about having to tick a box.

Real contact and building relationships with people with dementia fuels new and simple ideas.

Over the last 18 months at Innovations in Dementia I feel I have thrived being involved directly or indirectly in – The growing DEEP network; the greater inclusion of people with dementia not as research subject but as co-researchers; creation of practical suggestions to help put the meat on the bones of what is now the new Welsh dementia strategy; contributions to the new NICE draft guidelines; the piloting of relationship-centred approaches through the Getting Along programme; the provision of an expanding platform to capture raw and real experiences of people through Dementia Diaries; supporting and leading plenary sessions at UK and Scottish dementia congresses; offering real examples of co-production through the Good life With Dementia course where people with dementia are course designers and course tutors.

There are fantastic projects around, and there is a real movement to properly include people in design development and delivery of services – but the inconsistency I encountered kept me moving.

iD has just completed 10 years – of doing what it says on the tin. I wasn’t there at the beginning. Instead I was searching for the right fit. Coming to Innovations has been like coming home.

With all my unconditional positive regard