Living with dementia 

Advice, help and support for anyone newly diagnosed with dementia, worried they have early signs of dementia, or caring for a person with dementia.

Worried someone has dementia?

Transcript of Living with dementia

I noticed, in the late 1980s,

that Ethna began to be a bit unsure about things,

things that she normally would have tackled very, very easily.

For example, she was reluctant to use the electric oven.

She was reluctant to use the washing machine.

And then she began to repeat questions,

and she also began to have some complaining of physical problems

that didn't seem to have any sound basis.

The diagnosis was the last part of the whole story,

insofar as there were some years before that

that I noticed a change in Peter. He was not energetic any more.

He had no ambition.

Very different man to the man I married.

Recognising the symptoms of dementia is a difficult thing,

but quite an easy thing, as well, in many ways.

The thing that's difficult is that people often assume

that, er,...

memory loss, becoming confused,

is a natural and normal part of growing older, but it's not.

The thing to do is to be alert to changes in people's abilities,

including their ability with memory, and, if you're worried about that,

the same as any other symptom you might be worried about,

the best thing to do is to go and see your doctor and talk it through.

The diagnosis of Alzheimer's, when the consultant told us,

he said he was very sorry, and I must say that I was very sorry, too.

I hoped that Peter was fine, and it was just a blip on his health.

But we then decided to be very positive about it,

and cope with whatever we've got to cope with.

It's totally unpredictable,

the speed at which the illness will develop,

so we've got to hope that, while the illness is developing,

we can still encourage them to lead as normal a life as possible.

It's about focusing on what individuals want to do,

and what individuals can do, and then trying to help,

or try to decrease the disability caused by what they can't do.

The telephone is becoming quite an ordeal

because of all the little buttons.

I'm going to have to try and get a simple telephone

with, possibly, photographs, so that he can press a picture,

so that he can ring, say, a sister or a friend in that way.

I think we realise now that, post-diagnostically,

the person who's suffering from the illness

should be encouraged to lead as full a life as possible,

to maximise their potential.

Normally I try and get up at lunchtime to see Ethna,

and at tea-time, to help with her feeding.

That, er, is the essential structure

of my daily routine.

The most important thing is to not be afraid to go for help.

Dementia is a common illness. There is a stigma about dementia

that stops people from seeking help and asking help.

Don't let that affect you. So do ask for help.

Ask for help from your general practitioner.

The other people to go to are the local Alzheimer's society,

and they will provide you with good-quality care and support.

We've both made new wills,

and made it clear that, in the event of my death,

Peter will be looked after through this lasting power of attorney.

I have now left everything to the children,

in the hope that they would look after Ethna

as well as possible,

and I have no doubt that they would do so.

I think the key to living well with dementia

is getting a diagnosis as early as possible.

Knowledge is power. If you know what the cause of the problem is,

then, you can start to make your own decisions

about what you want to do now, what you want to do in the future.

You're preparing both yourself and your family

for living with an illness.

I've got to go on with life. I've got to be strong for Peter and myself.

It's no good throwing your hands up and just saying,

"Oh, God, what's happened?" It's happened. We'll cope with it.

I think it's more...

..having a positive attitude, that we're going to do the best we can,

rather than be overwhelmed by the problems

that this illness brings to us.

I'm talking from the point of view of a carer.

It's really an attitude of mind.


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Video: early onset dementia

John and his wife Shirley describe how they've adapted their lives since John showed early signs of dementia. Get also expert advice.

How to get a dementia diagnosis

Just being forgetful doesn't automatically mean you have dementia – that's why it's a good idea to see your GP