Name and praise…or shame!

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).

But…

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!

Still alive inside our skulls

John Crace, Bill Oddie, Cartoonists, Comedians…me…

Some of us seem to be living on the edge of an abyss into which we long to look but which beckons us to our doom.

It seems that you have to be on the edge of sanity to be able to see the ridiculousness of life.

Artists are famed for their edgy existence, and their ability to see differently. To rise out of their skins and look down in amazement at the beauty beneath and around them.

Or the madness of life and people.

Who, after all, are the mad ones? R D Laing inspired me in my twenties to think of mania as a two edged blessing. The ability to have moments of true nirvana, other worldliness, simply lifting out of the humdrum and aggression and boredom of most living.

But also the other…those frightful downs that take you to the edge of despair, perhaps beyond, where an abyss opens around you and you look down at the inferno of hell.

I am not an artist. I do not have extreme manias. I do swing up and down, and I do have the ability to look at life and see madness around me, and the worst of human behaviours, and to be unable to ignore them. I do have occasional manic episodes of pure beauty, and of pure horror.

In my twenties I had a breakdown and a year’s psychotherapy. It gave me huge insight into my own moods and thoughts, into human behaviour, and into archetypal patterns in symbols and in nature.

My dementia has added another layer of understanding, or perhaps is taking away layers. Understanding…of the brain’s incredibly complexity and infinite capacity.

And losing some of that capacity to make my body and thoughts work automatically, without deliberate thought.

While I and others living with dementia may be unable always to express our thoughts, we are still thinking them. We are alive inside our skulls. We breathe, we think, we live. We may have less control over what others see and hear, and over how are external bits work. But we still think and imagine.

We may lose the faculty to process some incoming data, like smell or taste or sound, or perception of our surroundings. We may lose the faculty to convert our thoughts into words. We may lose the faculty to sequence what we want to do.

But we are still inside our skulls. We still think and feel. But you cannot see it. And you may be tempted to assume that what you cannot see does not exist.

Nothing could be more wrong.

The great value of the artist in society is to see what others do not see. To look at everyday life and interpret it differently.

To stop the humdrum rushing around which blinds us, and to just see and reflect and interpret.

Manic episodes can be appalling or beautiful. R D Laing suggested that we should not seek to classify these as madness. Who, after all, are the mad ones? Those who rush, or just languish, through life without deep feeling, and who live in the middle of the road? Or those who veer madly to the edges, and who dice with death and paradise?

It is a blessing and a curse. But above all it is the artist who sees what many do not. Truth. Beauty. Horror and darkness.

And it is the artist who leads us to greater understanding of living.

Dementia was for centuries regarded as madness. Dementia is not of course a blessing. (Although I have heard a Christian academic suggest it could be.) Dementia is simply a disease which prevents our brains from working in the usual, unremarkable remarkable way we take for granted.

To use a familiar expression:

See the person, not the dementia. Lift yourself out of your usual humdrum assumptions and look afresh. As Atticus Finch told his children, you cannot understand a person until you have walked in their shoes.

While you cannot walk in the shoes of the person with dementia, or any other disease, you can step back, lift yourself up, and ‘see’ what is in front of you.