Munchausen by dementia

We are definitely not representative

Nope. You’re right. 

We are not typical of people living with dementia.

We are not the usual people who visit GPs and clinics for diagnosis. 

We should be ashamed of such hubris, standing up and talking for people living with dementia.

Of course we have absolutely no right to claim that we know what it’s like.

And indeed, it is highly probable that we have a wrong diagnosis, since we can obviously talk coherently about our lives.

When we go up on stage you should not listen to us.

When we describe our symptoms, don’t believe us. 

We’re lying. Making it up.

We all have a psychiatric condition that makes us need to have an illness to feel important.

Munchausen’s?

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Let’s face it; we are all deluded seekers of headlines and self aggrandisement.

I do agree with you…we should be sitting at home staring out of the window.

Frothy blobs dribbling down or chins onto our shirts and skirts.

We should be unable to eat or drink without help. Unable to speak.

Unable to remember what day it is, or who you are.

So, please do just ignore us. Take no notice.

We don’t fit the mould. 

We are still active in our communities five years after diagnosis. That’s wrong. The diagnosis must be wrong.

We are still travelling around the country. 

We can speak fluently in front of a hundred people.

We look normal. 

It must be wrong.

You told me you cannot believe I have dementia.

You told me you often lose your keys, or forget why you went upstairs.

If you’ve got it, so have I.

And of course, you are right. Spot on. Of course I haven’t got dementia.

I made it up for fun. Because I need to be the centre of attention.

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And because I want benefits and support that without diagnosis I could not get.

Yep…absolutely right. I get so much support you wouldn’t believe it.

Yes I want a blue badge to save me walking so far. Because I am lazy. I just don’t want the hassle of parking with everyone else. And it saves me paying for parking.

It is not because I get lost, or because my wobbles may cause me to fall over.

It is really great fun pretending to have dementia. 

So please remember…

Don’t listen to us.

Take no notice when we say we have bad days, or we cannot answer unexpected questions.

Take no notice when we tell you we cannot see things in front of us, and when we claim we burn ourselves when cooking.

When we say we cannot remember how to tie shoelaces, or fill a kettle.

When we say what you see is not what we are like at home.

You are right. We are not what you see in newspapers or on television.

And of course we have no right to come out in public and ask for support. And care. And help.

What we should be doing is hiding away where you cannot see us.

Then we won’t exist. And you will know that you are quite right.

You can then speak for us. Oh how wonderful that will be. So much easier for us both.

You can then decide what you want to give us. And you can say we are of unsound mind, and cannot make decisions. And you can lock us in, and tie us down, and cosh us with pills. 

Like the good old days. The good old days.

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Well, I have enjoyed our conversation, and I think I now understand. 

Now, where’s the bedroom?

A few odd moments

Just had a few odd moments.

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I could not place some names in my emails.

They meant nothing at all.

Blank. Fog.

Who are they? 

Why have I got email from them? 

When did I meet them? How do I know them?

Have I missed something?

And yet, and yet…

I just presented at a workshop for a new dementia strategy for our local community health trust.

Dementia is everyone’s job.

That is what I say anyway.

And I spoke fluently and brightly about dementia…brain disease.

And people said they would never think I could have dementia.

I don’t blame them at all. I sometimes wonder myself.

Just for a while.

Then I look through my email and the names mean nothing at all.

I just cannot find them in my memory.

I have to concentrate so hard and keep my brain engaged on what I do to keep my act going. And it really does feel like being an actor in a loosely scripted drama. Lot os improvisation, but the less the better.

Some of it is easier…Talking in public about dementia, for example. Done it so often now that it is pretty much locked in.

But that pushes the rest out of reach. 

And I need some down time and quiet to re-activate or redraw my wiring diagram.

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……..

There are times when I get tired of doing this, talking about what services should look like, what matters to us, what is missing…and why.

As someone said to me today. It’s all very well going to these meetings and talking, and writing down ideas and observations. 

What about the HOW? 

How will “we” make these things into a model and make it happen?

Or, rather, who will make them happen?

Who will push for commissioners to commission different services, and services differently?

Will the Trust leaders be passive and simply continue to provide what is asked of them? Or will they speak up and lobby on our behalf? 

We’ve told them what matters to us, so we can live as we choose, with the support that enables us to do what makes life worthwhile.

What is their responsibility? 

Is it to their commissioners or to their community?

To their paymasters or to their community

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Human rights do not depend on funding, they are fundamental.

Human Rights do not depend on funding. They are fundamental.

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I am trying to get my head around what support should be provided for people living with dementia. What will help us? What we have a right to. And why this is justified.

I’ve looked at some of the guidance and pathways from NHSE and NICE. 

I’ve looked at guidance about cancer pathways too.

But I can only find documents relating to prompt diagnosis and treatment. Not post diagnosis support.

Most dementia documents, including the prime minister’s 2020 challenge, also refer to diagnosis, or at least the start of testing, within six weeks of GP referral. They steer clear of what is to be provided afterwards, other than care planning, and advice and information about keeping engaged, and obtaining benefits.

When I spoke to the GP chair of our CCG last month, he said they didn’t have any money for more dementia services. They have two pilots for dementia navigators, till next year. Evaluation pending. 

And funding to support Alzheimers Society activity locally is being cut each year.

With cancer, you get the diagnosis, you get treated, often for years, you recover, you live in remission (with the fear at the back of your mind)…although around half will die within five years.

With dementia you get a diagnosis, you may be eligible for a drug to reduce the effects for a while, and you live on, slowly (usually) declining.

So what is the difference, and why do we want more?

A person with cancer…except brain cancer…usually retains their cognitive capacity. They can manage their lives in the same way as before, though with probably changed emotions.

A person with dementia is losing their cognitive capacity. They therefore cannot manage their lives in the same way as before the disease, and they therefore require help to continue to do so.

This is the key. It isn’t that post diagnosis support is sort of nice if we can afford it… It’ll just help people who get upset at times…

Post diagnosis support is what enables plwds to continue to live their lives as they choose, to navigate the complex world around them which they are losing capacity to deal with effectively.

It will help them live their family life, find happiness, do what gives them pleasure, and get the support that makes life possible. And these are fundamental Human Rights. Not optional.

That is the bit that all these pathways leave out.

Except two, published by the government itself.

What to expect from health and social care services following diagnosis. This document uses the word “should” throughout, not “must” or “will”.

https://www.gov.uk/government/publications/after-a-diagnosis-of-dementia-what-to-expect-from-health-and-care-services

And the Prime Minister’s Challenge 2020, Roadmap to Delivery.

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/507982/PM_Dementia_Annex_2_acc.pdf

Both of these pathway documents include Dementia Navigators or Advisers.

Essential people who know local systems and services and communities. Who know the people they support. Who are available for a chat, or advice, or support. Who remain with you for years. To support you when you need it. Who help you navigate systems and benefits.

There’s no mention of Admiral Nurses, although the documents do refer to specialised support.

So what is it that we need, that we have the Human Right to receive?

  • Early Diagnosis, at any age.
  • Information about LOCAL services and groups.
  • Dementia Navigators throughout our journeys.
  • Shared living planning, owned by us and our families, contributed to by all our health and social care professionals and others.
  • The services of GPs, Occupational Therapists, Physiotherapists, Bereavement Counsellors, and others, when we need them, not when it’s too late.
  • The social care and health care staff who work with us must all be trained to level 2 of the training standards 

http://www.skillsforhealth.org.uk/services/item/176-dementia-core-skills-education-and-training-framework

  • Admiral Nurses, as and when we and our families need them to avoid crises.
  • Personal health and care budgets to enable us to live as we choose.
  • End of Life planning, starting soon after diagnosis. 
  • And of course support to remain living where and how we choose (social care, assistive technologies)

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I think this would be a good system, though there is a lot of detail beneath each element, and delivery would vary according to local geography and demographics.

There are a million people living with dementia, and the same again of family carers. This is not a tiny little minority group. Though that would not alter things one jot. Human Rights are not just for the many.

There must be no choice for whether local commissioners provide this model. It must be consistently provided everywhere. Human Rights are not optional. They apply to every individual, always.

Lack of funds is not a defence. Human Rights do not depend upon funding. They are fundamental. In actual fact, evidence shows that the elements in this model would save the country more than they cost.

The law needs to be changed so that CCGs cannot escape their responsibilities to implement this model. NHSE and Government must be able to require by law that this model be implemented everywhere.

I call for action across the countries of the UK to demand that parliament change the law to insist that this model of support for people affected by dementia is implemented throughout and in every corner of our countries.

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……..

The Dementia Statements

  • We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society.  Our diagnosis should not define us, nor should we be ashamed of it.
  • We have the right to continue with day to day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.
  • We have the right to an early and accurate diagnosis, and to receive evidence-based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.
  • We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.
  • We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.