Early onset dementia 

Early onset dementia can affect people before they reach retirement age. In this video an expert explains the value of early diagnosis and planning for the future, and John and his wife Shirley describe how they've adapted their lives since John showed early signs of dementia.

Explore the dementia guide

Transcript of Early onset dementia

Dementia's a term that describes lots of different conditions...

..that can cause memory problems, disorientation, communication problems.

There are about 400, over 400 in fact, different kinds of dementia.

The one everyone's heard of is probably Alzheimer's Disease.

(woman) John was showing signs of being a lot tireder all the time.

Didn't matter how much sleep he got,

didn't matter whether we were on holiday, he was still very tired.

You had minor things, forgetfulness,

and more major things, where he just wasn't getting things.

And his driving was deteriorating a bit as well.

Shirley... had expressed on numerous occasions...

..that I wasn't getting certain things right, probably through forgetfulness.

And my first thought was, some people I work with are like that, no big deal.

But you hear it enough times and you think, "OK, I'll go and see someone."

At the moment there is no single positive test for dementia.

No blood test will tell you you've got Alzheimer's

or any form of dementia.

So dementia is currently diagnosed by a process of eliminating everything else.

(Shirley) I don't think John really thought about dementia,

because he was more, I suppose, in denial in the sense...

"I will be better once I've had a holiday, when I've had a bit more rest."

But I thought... If you live with somebody

you pick up the signs easier than they would

because you're seeing it all the time and thinking,

"This isn't right. This isn't how you were two, three, five years ago."

If you're able to get a diagnosis at an earlier stage,

you're then in a position to make plans.

You can make plans for how you want the rest of your life to be.

(Shirley) John finds is quite difficult to look through legal documents now

because of his memory.

If he's reading a page, he wouldn't remember it all.

So I find a lot of that falls on to me.

When it comes to financial planning in terms of family,

everyone should have a will.

Having a diagnosis of dementia doesn't mean you can't take out a will.

So you need to sort the will out.

You need to take out a lasting power of attorney.

This enables someone to take care of your finances

should you become incapable of doing so,

and also to make health decisions for you,

and perhaps make decisions about where you live.

(John) You have to concentrate on living in the present.


I can see that some might think, "Well, that's denying the future."

It doesn't feel like that because... the future is... is something else.

If the present holds many good things and is happy for me... It does...

..I'll suspend things in the present for the time being.

(Shirley) The help is out there.

Doctors will point you in the right direction.

You can get help, and really the earlier you ask for it, the better.

And even if you don't fancy going on to a support group or whatever,

we haven't done everything we've been offered...

it's quite interesting to get yourself involved

so that you see how other people are dealing with it.

There are roughly around 700,000 people with dementia in the UK.

And someone recently said, "Once you've met one person with dementia,

you've met one person with dementia."

So everyone's experience of dementia is different.

As dementia progresses, you probably find you need more and more support.

But the precise kind of support you need depends very much on you.

On the kind of symptoms you're having and also what you want.

I've been surprised at how supportive people are.

One is...

very, um...

(tuts) ..grateful to those that help

through whatever source they might come:

friends, family, societies, employers...

The world is quite a helpful place, I have found.


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All about dementia

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Read about what causes the different types of dementia