Time for a dementia revolution


Wow. One million dementia friends.
Got my gold butterfly yesterday.
Not that I have done more than about 35, I think.

I have offered to put on sessions many times to local NHS trusts and a few other organisations
But so far no one has taken me up on these.
Odd, to turn down free offers.

But the community trust does want to put all staff in one of its community hospitals through the friends awareness session. And to make that hospital dementia friendly.

(Um…shouldn’t it be anyway?)

I’ve held a session in my town.
Three people came.
Better than none, yes. But hardly cause for rejoicing.

I was reading a piece about the dementia friends project today, it being Dementia Awareness Week.
What do we hope becoming a friend will change?
Being patient when someone ahead in the queue is struggling with change or packing their shopping.
Helping someone catch the right bus and get off at the right stop.
Offering help to someone who seems to be lost or confused?

Well I put these things into the helping one’s neighbour drawer,
Being a good citizen, a kind person.

So what else is dementia friends about?
I think the key learning is about
Dementia being an illness not old age,
And that you can live well with dementia.

It is about awareness of the disease, so you may recognise a person’s difficulties and offer help.

It is about getting people to talk about dementia
Like they do now about cancer.

And it is about starting a social movement that will influence change.

I also read about a CCG that is decommissioning their Admiral Nurses.
And I know of a nearby CCG which has decommissioned RAID at the local hospital.

RAID is a system for supporting people who attend A&E or are admitted and who have mental ill health. They need careful care, supportive interventions…
RAID is a well recognised system that has been introduced in many hospitals across the country.
It helps the many thousands of patients with mental ill health, and who have historically got a very raw deal in A&E.

Mental health services are underfunded.
And it is now going to get worse.
And HSJ carries articles about mental health trusts facing budget cuts in coming years.

The skilled admiral Nurses will be replaced by a carer support service.
I guarantee the new staff will be much lower skilled and less knowledgeable and lower paid.
In fact, probably it’ll be provided mostly by voluntary sector organisations.

It’s all very well growing the number of people who are dementia friends.
But what about the skilled, expert support that people with dementia need?
I don’t see these services being grown.
And there are too many people who are unsupported after diagnosis
In ways that would be meaningful and useful.

We’ve only scratched the surface of what is needed to support people with dementia.

Diagnosis is a start, not an end.

7,000 new diagnoses since the election, Jeremy Hunt blogged yesterday.
7,000 more people needing information, support, care, encouragement…
And their families too.

Are memory services growing?
Are dementia cafes growing?
Are peer support groups growing?


Dementia Action Alliances?
Great organisations and great, dedicated volunteers.
Great intentions.
A few successes.
But I tell you what,
It’s scratching the surface if we don’t get real funding for professional dementia services.

Fewer than half of DAA members have updated their action plans in two years.
They may be doing some good stuff, but many are not.
That’s not really success.
Looks good on paper, but…

I have dementia.
And I want timely, appropriate support and information during my journey.
I want expert Admiral Nurses to help me and my family.
I want peer support groups and drop in cafes.
I want singing for the brain and men’s sheds.
And I want open, honest conversations about my illness and my life.

I want these for everyone.

We need to move further than dementia friends and action alliances.

We need a revolution in how we support people living with dementia.

And we need to ask these people what it is they want to help them live well.


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