Very much able to live…

Good morning everyone.

What a wonderful event. It’s a privilege to be able to talk to you today.

I live with young onset dementia. I was diagnosed in 2014 at the age of 62. I chair the Dementia Action Alliance which now covers Shropshire, Telford and Wrekin.

There’s a lot of talk nationally about Dementia Rights at the moment…

But Let’s start with some myth busting.

Is a person living with dementia disabled?

That is the question. What do you think? Hands up.

Is a person living with dementia covered by the equality and diversity scheme? Hands up.

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Is dementia a mental illness or a physical illness? Hands up.

Does a person living with cancer have the same right to good timely health care as a person who has had a stroke?

Does a person living with dementia have the same right to good timely health care as a person who has had a stroke?

Does a person living with diabetes have a right to live a good life?

Does a person living with dementia have a right to a good life?

Does a person living with dementia have the same right to use public transport as a person with cancer?

And so on…

Are you with me? We have all built up stereotypes and cliches around health and illness and these dictate how we think. To be aware of these misperceptions is to change them.

So let’s move on…
How do you define “right”? What is a “right”?

Is it a moral right…because we ought to care for people in need?

Is it an ethical right?…because it would be wrong to single out a sub group of humanity for inequitable treatment..

Is it a legal right?…because the law says people living with dementia should get the same access to treatment and care as others?

Does the NHS Constitution specify that people living with dementia have a contractual right to timely, safe, respectful care?

Well…I think all of the above, actually.

Should people living with dementia have the right to live well?

I don’t hold with the phrase “living well with dementia”. It’s not good…it’s shit. It’s a one way journey and you know what’s probably coming towards the end. But that doesn’t stop you from choosing to do things that make you happy. That make you feel you’re doing something worthwhile.

Let’s change living well to living as I choose. Not as others choose for me. Not as others allow me to live.

There’s a phrase coined by Kate Swaffer who lives with dementia in Australia. It is “prescribed disengagement”. It applies to what often happens when professionals talk to people with dementia about what they should or can do with the rest of their lives.

Don’t tire yourself. Avoid places which might be confusing. Don’t take risks. Stop driving. Avoid crowds. Avoid stress. Stop doing the things that you find difficult.

Prescribed disengagement…from life as we know it!

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And absolutely the wrong thing to do. Keep engaged socially. Take risks. Live.

So what then are the difficulties and barriers related to health care for people living with dementia?

Making an appointment. Getting to a GP surgery or to a hospital. Explaining your symptoms and history. Again and again.

Explaining your pain. Deciding whether you want treatment, an injection or blood pressure measurement…being able to say no. Choosing your menu. Needing time to think, to process thoughts and sensations and perceptions…

Finding a toilet. Recognising a toilet. Knowing where you are, what time it is.

Disorientation in unfamiliar surroundings. People you don’t know. Strangers causing you pain and distress.

Do patients who live with dementia have a right to understand, to make choices, to toilet themselves, to eat food they like?

Yes, of course they do.

If you have cancer you get superb treatment and care. If you have a stroke you get specialist care and therapy. We know these help recovery or survival.

But Dementia is different. It does not go away. You don’t recover. You die. But not for a long time usually. You’ve got plenty of time to live. Historically…and, shamefully, still alive and kicking today…there has been a hide-them-away attitude. Out of sight out of mind.

And, as a GP once said to me, if it can’t be cured it must be endured. Why waste money and time on a disease we can’t cure? Why get an assessment and diagnosis if there is no cure? There’s no point in you knowing.

Well I’m here to tell you…there is every point in knowing. And there is treatment for many forms of dementia to reduce the impact for years.

Those who develop young onset dementia, under 65, and there are around 240 in Shropshire, have a diagnosis rate as low as 20%. For older people it’s 70%. Why the difference?

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Well I’m betting it’s because when a 55 year old says they have memory difficulties or that they get stuck in sentences, or disorientated in Aldi, their GP puts it down to work based stress and depression. As they did with me.

They don’t think, ooh, I wonder if it’s dementia…the symptoms are suggestive…let’s just do some tests. No. They give you antidepressants and perhaps some CBT and send you away.

But IT doesn’t go away.

So we young onset people fail to get the medication which would keep us functioning better. And we don’t get that precious time when we can still do those things on our bucket lists. And make wills and powers of attorney and advance directives.

Because later on it’ll be too late.

We just keep flogging on at work, hoping it’ll get better.

And at work, how many employers will make adjustments, provide equipment like an iPad, or find an alternative role, for staff who develop dementia?

Yet do we not have a right to employment, to a satisfying life, a fulfilling life?

Yes we do. Yes, yes, Yes we do.

It is time that we all change how we respond to people who are different from ourselves. Doesn’t matter whether you’re gay, bisexual, Romany, Egyptian, Catholic, female, or you live with dementia…you all have a right to live as you choose, and to be allowed to do so. And to access good quality health care when and where you need it. Some people just need a little more help and understanding than others in order to do so.

Why wouldn’t you want to give this?

For me, equality is not about everyone getting the same. It’s about every individual getting the care and support they need, and being able to live as they choose. And it’s up to all of us to make this happen.

I believe that we can do this. Yes we can. And yes we will.

And to return to the question I posed when I started…

Are people living with dementia disabled?

No. We may have some difficulties with living from time to time.

But we are very much able to live.

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(This is a talk I gave in Shropshire this week.)

 

One thought on “Very much able to live…

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