Are Dementia Friends and Dementia Friendly Communities working?
I have heard or read several people posing this question recently. And indeed I have been wondering for some time.
Is the name right? ‘Dementia Friendly’?
Do stickers mean anything?
Does anyone check that organisations actually provide a ‘dementia friendly’ service or environment?
Is there enough/any resource to back up the DAAs and NDAA work?
The Dementia Friends project was the brainchild of (Big Society) David Cameron. He set ‘the dementia challenge’ back in, what, 2012?
It was a great idea. There was (and is) huge need to increase awareness and understanding of dementia, and how communities and organisations could support people living with dementia to remain active and socially engaged.
And harnessing people to get involved in a social movement was certainly a great approach. It inspired many of us to become Dementia Champions and to deliver awareness sessions.
I was never a fan of awards for those who were deemed to be outstanding in various spheres of activity and influence, as awards go to just one person, and leave all the others who give time and commitment feeling a bit dry. No doubt one reason was to have a reason to,hold an event to celebrate successes each year. I was a judge one year, and I really did not want to select just one from a sparklingly good shortlist.
And counting and competing on numbers is not really in keeping with the social movement it was intended to be. Nor does quantity equal quality.
Now, eight years later, with nearly 4 million dementia friends, several hundred DAAs, and two thirds of NHS Trusts signed up to the Dementia Friendly Hospital Charter, it is time to review what has been achieved. Especially while we are locked up/down.
I have been on the inside of parts of the dementia friends movement, as well as being a person living with dementia. I started and chaired my local Shropshire and Telford DAA. I have made around 600 ‘friends’. I co-wrote the hospital charter statements.
I know that there has been very little resource put behind the movement. Just enough to employ regional co-ordinators, National DAA staff, and to create resources…which WE have to print.
The NDAA staffing has fallen in the last year to around 2! Regional dementia friends co-ordinators have shrunk in number and grown in geographical coverage.
So, what state are we in?
I welcome and value the 3-4 million friends who are more aware of what dementia is and how it affects us.
I welcome those (few?) organisations that have really worked to change and to incorporate features of being dementia friendly.
I welcome the bi-monthly meetings of our DAA where we share progress, ideas, plans. And raise awareness.
I welcome the smaller DAAs in our market towns and villages.
I welcome those (few) hospitals and community services that have really tried to change for the benefit of their patients (and staff).
Too many shops and organisations, councils, etc, have signed up, done a few awareness sessions, and then…nothing.
DAAs have in some places become vehicles for local councils or individual egos) to declare their town to be dementia friendly, with little visible, meaningful progress.
DAAs may be running out of steam, with no resources and little support.
Too many NHS Trusts have signed up to the Charter and done very little for their users (and staff).
So, should we now adopt a new approaching ?
What could we do differently?
Well, how about using social media to name and praise good organisations, and shame bad ones?
Larger retailers and other organisations employ social media software and staff to find negative feedback and respond quickly to it. Why don’t we all just tweet or facebook etc the places that are helpful and friendly? And encourage people not to use the others?
So, we could look out for and report shops (like Gail’s M&S) and organisations that are customer friendly and dementia aware.
And report those that are not. (Like Gail’s Morrisons.)
We could really affect footfall and spending.
Gloves off, is what I say.
Name and praise hospitals, or shame them.
Councils, coffee shops, railway stations and train companies…they all hate negative publicity. But at the moment because we are too nice they get away with it. And most of us, me too, hate face to face complaining. So put it out there on social media.
No funding needed. No organisations with vested interests linked to funding. Just – yes – social movement. No certificates to be issued. No stickers. Just real voices of real experience.
Thousands of us. In fact millions.
Don’t be afraid of your voice and power. Use it directly yourselves.
I do, however, believe that dementia friends should continue, perhaps as ‘dementia aware’. It is, when done well, hugely important awareness raising, in person. And these sessions should always include a person living with dementia to give the reality of symptoms and challenges in their lives.
So, let’s start a debate while lockdown continues for many of us. Let’s change the paradigm. Let’s take control.
Be the change you want to see!