Now here’s a Manifesto

It’s election time again here in the UK.  Two years ago, at the time of the last election here, I was privileged to co-facilitate a course for people recently diagnosed with a dementia.

Our group produced some powerful statements.  What better time, then, to share the Manifesto they produced below.

Our statements, our learning – a manifesto

Statements:

We want to challenge outdated views of dementia

We are very important.

Many people can learn from us and from our experiences.

We have so much still to offer

We’re still us

Our upbringing and previous experiences affect how we live today more than dementia

We don’t feel old (some of us aren’t!), we feel okay!

We’ve all had a knock to our confidence

We have a right to share how we feel, just as carers do

Dementia friendly is about being friendly, not knocking our confidence or exposing us

Laughter is a good thing, we can still do that

Living well and engaged is still possible with the right support because it’s hard being on your own a lot

I’m so much more than a person with dementia

We are comfortable talking about death

 

Our knowledge of dementia

Dementia is about losing nerve cells. But not all at once – so we just get on with today.

If I like something or fancy someone, I’ll definitely remember! Yes – our emotions remain very much intact and so we remember things of emotional importance.

We know we will more than likely die with dementia than die of dementia, so life goes on!

We might forget your name, but there’s no denying the love we have for you.

An upside – that feeling when you find a dress you forgot you bought!

If we repeat ourselves – so what?!

 

What we ask of you

Don’t highlight our mistakes, don’t rub it in

Help us stay connected

At diagnosis we got little or no information – we want more in-depth information to hand on diagnosis

We want the right to find out more about our dementia

Don’t see repetition as a problem

Don’t see repetition as a problem

Don’t see repetition as a problem

 

So, what to do?

Concise and powerful, there is a lot in there about proper, not tokenistic, inclusion of people with dementia; about a need to focus on equipping people to live well with dementia; and about the huge benefits of ongoing peer support. DEEP, the UK network of Dementia Voices, is now a mushrooming network of over 80 such groups UK wide. Indeed, with Minds and Voices, the DEEP group here in YORK, we are in the process of co-producing another course for people recently diagnosed. this time however the course is being co-designed, developed and delivered by members of Minds and Voices who will be tutors on the course. The course will run in September/October this year.

 

So, commissioners, take note. This manifesto gives real indicators as to how services and policy makers could respond. You maybe can’t afford to add extra stuff to your offer, but you can revisit how you operate to  strike a better balance on the one hand between what is often a tired and outdated service offer seeking predominantly to relieve carers, and on the other hand a need to enhance the quality of life of individuals who still have a RIGHT to voice, choice, control and identity within their relationships and their communities.

At Innovations in Dementia, decades of collective experience and a decade of continued engagement mean we have developed a very clear idea of what constitutes a comprehensive inclusive service.

It’s time for a new approach.

Let’s revisit the meanings of day care; respite (for whom?); long-term care based on the asylums (lots of people under one roof); and  recovery’.

Dementia-friendly communities will be redundant without dementia-friendly and dementia-supportive relationships.

Let’s equip the front line, not with tedious work books, but with a range of practical, emotional and psychological skills.

There are already some fantastic practice examples out there:

As mentioned, the UK network of Dementia voices (DEEP) – already changing lives and a resource to lead on policy change, service delivery and dementia learning.

Getting Along– a new programme from Innovations in Dementia addressing both sides of the caregiving relationship

Super Carers’ high quality tailored care

Shared Lives – where people live together in welcoming normalised environments

The Debenham project – a superb community-led initiative in Suffolk

The TRIO service from PSS in North Wales.

 

Perhaps it’s time to light a fire under the whole set up. We can help you rebuild.

Damian@myid.org.uk

 

 

 

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