Dementia: Making a Difference

GROUP: # Happy birthday to you, Happy birthday to you

# Happy birthday, Dear Jerry

# Happy birthday to me. #

80 years old.

Cyril, or Jerry to his friends, is in fact 90, and he has dementia.

Where's me missus gone now?

It may not be of great concern if you're only in your twenties,

but if things remain as they are,

one in three people over 65 will develop dementia.

It's a devastating condition that gradually erodes the brain

and a person's ability to remember, to understand and communicate.

It isn't a normal part of ageing.

World-leading genetic research in Cardiff

does offer hope for the future,

and dementia care in our communities is becoming a greater priority.

In this programme, we'll look at those

in the earlier stages of the disease,

as they try to cope and live a life with dementia.

A proud Irish man from Dublin, Jerry came to Wales after the War

to work as a skilled mechanical engineer in Newbridge, Gwent.

In his spare time, he could turn his hand to just about anything.

This is the kind of thing I made -

it's the turning and anything to do with it - as a youngster.

That was his life.

He loved his workshop, and his tools.

He's always been such a busy man.

Following the diagnosis of dementia three years ago,

Shirley felt devastated and alone.

I didn't know anyone with dementia...

..so I didn't know who to ask.

I didn't even go to the doctors and ask.

But there was no-one called me.

All right, lover, we'll have a nice cup of tea

and we can have a chat about what we've done this morning.

'You go out and meet people who say to you,'

"Oh, how are you?"

"Oh, I'm fine, everything's good."

And you're telling fibs, telling lies all the time.

'But we don't want everybody to see how we really are.'

So, as I say, you've had a good day today, opened all the cards

and seeing all the friends again.

'I didn't want to talk about it to anybody.'

I didn't mention it to a lot of people.

It's like as if it's a dirty word then, you know?

'You're in denial.

'You don't want to believe that that's happening.'

That looks good, anyway, that's great.

Hope for a treatment or cure may lie here in Cardiff

with the pioneering scientific research taking place

into the genetic causes of Alzheimer's disease,

the most common type of dementia.

Led by Professor Julie Williams,

the work involves identifying variations in genes

that increase the risk of developing the disease.

Genes will take you to the heart of the mechanisms,

the things that are going wrong in diseases.

By looking for them and identifying them,

you will be able to identify the basic mechanisms

that are going wrong to develop the disease.

And that is one of the most exciting things about finding genes.

What we do now will have enormous implications for what happens

in ten, 15 years' time, cos if we don't work on these now,

you ain't going to have any therapies that are going to

try and prevent and delay the onset for the next generation.

Strands of DNA containing millions of genes

need to be collected from tens of thousands of donors.

Hello, how are you.

Hi, my name's Charlene, lovely to meet you.

Julie's field team are always looking for volunteers

and are today visiting Betty and 85-year-old husband Norman,

whose dementia was diagnosed two years ago.

Thank you very much for seeing us today.

What we'd like to do today is to split up, if that's all right.

-So, if I can have a chat with you, Norman.

-Right.

Before taking Norman's blood sample,

they need a case history and brief assessment.

-I'll leave you to it, then.

-OK.

So, Norman, I'm going to ask you some questions today,

some of them might sound a bit silly,

and some you might not want to answer, but that's fine.

Just try your best. Is that OK?

'First noticed,'

must have been about two and a half years ago,

when we went out to Australia to see our youngest son,

and a couple of times while we were there he got lost

on a very simple route, just didn't know whether to go left or right

and we had to go out looking for him.

Now I'm going to say three words. I'd like you to repeat them back

then try your best to remember them, because I'll ask you again.

The words are, apple, table, penny.

Apple, table, penny.

Lovely, thank you.

How do you think, then, Norman's memory has been

over the last two and a half years? Has anything changed?

Um, his short term memory has, rapidly, I think,

in the last six months, become worse.

Right, OK. In what ways, particularly?

Um, asking the same question, repeating the question

perhaps five, six times in five minutes.

Thank you very much.

And can you remember the three words, by any chance?

I'm sorry, they've gone already.

That's OK, that's absolutely fine.

If I keep cool, he's fine.

You're like his rock, aren't you?

Oh, no, I don't say that! But if I'm a bit...

You know, "Hurry up," agitated...

He reads that.

He reacts, yes.

Back in Newbridge, after 18 months with little support,

by chance, Shirley heard about a local centre

run by the Alzheimer's Society and gave them a call.

She and Jerry have been going there religiously

two mornings a week ever since.

Today, it's craft day.

I missed that one, I haven't seen that one.

There's some delicate cuts in there.

The blue's in the middle.

'You know you've got a bit of me time.

'You can go and have a word with the other people.

'I mean, they're exactly the same as myself.'

They need to be a little bit for themselves,

which is a big thing.

It helps when we go back,

cos when we go back to the house, you've got something to talk about.

You know, there's a different conversation.

Try and get in the grooves.

Come on, I want to see a sheen on that, look at Jerry doing his,

he's going for it, boy.

'At one time, I couldn't get him to leave me.

'And we were trying to get him'

to join in with others.

He's always been a very friendly man.

He used to make the conversation.

But then he didn't...

It's like he doesn't want to leave my side.

But being here, again,

is something that brings him out a little bit more,

that now he automatically goes there.

LAUGHING

Yes, you tell 'em!

'I'm in a different environment myself, now, here.

'And I do get a lot out of it,

'because I can leave him alone and he can carry on,

'so I'm not on his back and he's not on mine, then, you know?'

Go on then.

Happy birthday.

MAN: Jerry, can I have a kiss?!

Can you imagine?!

Jackie, who cares for 84-year-old husband George,

found that the key to finding support and information

was having a formal diagnosis at a memory clinic.

Today, they're back for a review with consultant Tony Bayer at Llandough hospital.

So, we're concentrating on the memory side of things today.

Is that a problem to you?

It might be, depends what you ask me, you know.

OK, what year have we got to now?

Oh, well...

I'm sorry, I don't know.

I think, 2012, we are now.

-Are we?

-Yeah.

Does that sound right to you?

2012, oh, good God, time's going on, isn't it?

-LAUGHING:

-Yes!

I thought it was about 2005 or something.

Well, you see how time flies.

'Until you actually'

have a diagnosis, really all you have is a set of problems,

and you don't know how best to manage them

because you don't know what the cause is.

If I just show you the pictures here...

'And that's not going to be helpful for families,

'and it's not actually going to be helpful for the person themselves.'

-What's that called?

-A burning cigarette.

A wristwatch.

Um, that is an Australian thing, I don't know what it would be.

I can't remember, I'm sorry.

What about this, what's that?

That's a crown.

OK, who would wear it?

Wear the crown?

The crown, yeah.

Well, probably a very prominent, um...

Yes, a prominent, uh...

Yes.

I'm sorry, I'm lost.

'Anything, really, that actually seems'

out of the ordinary for the patient

is worth bringing to the attention of your GP,

and then that opens the door to proper assessment and diagnosis.

So, do you have problems with everyday things,

like getting dressed, or choosing what clothes you might have,

or would your wife have to help you with that?

He can dress himself, but it's a little bit haphazard.

SHE LAUGHS

In that he might forget to take his pyjamas off, or...

So things go on in the wrong order sometimes.

'It's nothing to fear,'

being diagnosed.

it's more of a relief when you know what it actually is.

'Your attitude changes, because'

you understand why they behave in a certain way,

and that makes it easier - most of the time - to cope with.

OK, let's finish - what's that one?

A barrel of beer.

Today in Cardiff, Julie Williams is leading a unique collaboration

of elite scientists from Europe and the United States,

here to thrash out the next stage of their mission

to unlock the secrets of Alzheimer's.

So, thank you very much for coming,

it's great to see everybody's finally got here,

with all our technical problems.

What we really would like to achieve out of this

is extending what I think is a very successful initial collaboration...

Here, in one room, are the world's sharpest minds

in this ground-breaking field of genetic research.

..and I think we do better science together than we do apart...

'You've got to recognise,'

these are people that have been working against each other

and in competition for funding and papers.

Now they've had to put that all aside and decide to work together,

and that's a big thing in science, you know, but it's being achieved,

you can see it happening and evolving in front of your eyes. It's great.

But what we don't want is to pay for something that'll never get results.

That's my point.

THEY ALL TALK OVER EACH OTHER

Is it clear in their head of what is on the chip?

'We'll have disagreements, yes.

'We'll have people who want

'to go about it one way, and there's another way,'

and we talk about it and we get a resolution,

and I think today it's been great, because we've actually achieved that.

So what you're saying is that, out of this now,

there are six new genome-wide significant...

'I'm positive that the genes we find will be informative for the people

'that think about drug discovery,'

because the longer the list of genes they have to look at,

the longer the list of targets, the better chance there is

it'll pop and say, "That's the one we can design a drug for."

To put everything together in one, big collaboration is unique.

There's nowhere else in the world that this is happening,

so this will take Alzheimer's research forward in a leap,

and I think, you know, we may have got the answers in 20 years -

we're now going to get the answers in three or four.

This is the start of something really big.

Following his diagnosis, Norman and his wife Betty

were told about Solace, a carer support service in Cardiff

that offered an innovative programme of activities

called "Making a Difference".

-Good morning, everyone.

-ALL: Good morning.

Thank you for coming back and seeing me.

Do you remember what we did last week?

No?

-We talked about your childhood.

-Ah, yes.

-Do you remember?

That rings a bit of a bell, yes.

And do you know what day it is today?

No cheating, Norman.

Oh, dear.

-Anybody?

-Yes, it's Tuesday.

Alan, excellent.

Making a difference is a very simple programme.

It's repetitive, it deals with reminiscence,

'it looks at improving or stirring up people's memories.'

So, can someone tell me what has been happening in the news?

Winston Churchill's new wife's having a baby.

I don't think that was in the recent news, George.

-Wasn't it?

-I don't think so.

-I'm sorry.

-It's quite all right.

People come, they have fun, they recognise coming to the house,

they recognise the group members.

Very strong bonds are built there.

Routine and structure is what actually keeps people functioning.

They will all say at the end of it, "We don't want it to stop."

Thanks for coming today.

Jan has asked me to talk to you about person-centred care.

In the room next door, the carers also have an invaluable chance

to share and receive advice and support.

It saps your energy. It saps theirs as well.

You know, and everybody is left exhausted.

And then you've still got another 18 hours to go

before it's time for bed!

You're going to hear some different sounds, OK?

Try to recognise them by the picture.

QUACKING

-What was it?

-It's a duck.

-All right then.

-That's right.

-There he is.

You have to be positive about the illness.

You have to be positive about any illness,

but you can live well with dementia and you can have fun

and you can socialise and you can be the same as everybody else.

I find, if he's down or if he says, I don't want to do this,

I say go and play the piano for half an hour.

He'll go down and play perhaps for three quarters of an hour to an hour

and he'll come out and say, "Shall we have a cup of coffee?"

-It is amazing how it...

-It's fantastic.

It is amazing. That's one thing he hasn't forgotten.

He hasn't forgotten.

# Pack up your troubles in your old kit bag

# And smile... #

I wouldn't like to think where we'd be now if Solace hadn't been here.

I think I'd probably be on anti-depressants

and I'm not a person who takes tablets.

# What's the use of worrying. #

To me, personally, it's been great,

because gradually you realise that you are not alone.

# And smile, smile, smile. #

Excellent!

# Happy birthday to you

# Happy birthday to you

# Happy birthday, dear Bob

# Happy birthday to you. #

Hip-hip.

Not everyone can be cared for by close family in their own home.

Yes! Da iawn Bob!

All the residents at 'Gwynfa', near Caernarfon, have dementia.

Here they're determined to give them individual care and understanding,

and the staff have been given specialised training sessions

with dementia expert Joan Woods.

We're looking at communication today.

And we're looking at it in a more specific way

because it really is about how we work with people with dementia

and enable them to communicate their needs

and to enable us to be able to communicate effectively with them.

'The staff are very enthusiastic'

and have really taken on board a lot of the things

that we've talked about

at our previous session.

Ideal! I'm sure they would.

There's already a bit of evidence of good practice happening here.

It's nice to go back there, Annabel.

-What is that?

-The...

I thought it was going to come. It's the... What's it called?

It's harder to concentrate when we're older.

We have to put more effort into it.

But when we've got dementia, it's even harder,

because if the connections aren't happening in the brain,

you're not going to come out with the answer straight away.

That's what people are going through every day.

This is my wife.

Eira.

The love of my life.

Pwy ydi hon?

Mae o wedi upsetio.

If a person becomes anxious

and you're finding that you can't actually help them,

that you can't get through,

you feel sometimes for them that you can't get through to them

or they can't actually get through to you, so it's...

We find that quite hard.

You feel for the person inside, you know?

You should have some stories about France, Annabel.

Well, I used to go and come back, sort of thing.

-You've got a nice few pictures of Paris in there.

-Yes, there are.

Why did you go to Paris?

-Holiday or for work?

-No, it was a holiday.

-Holidays?

-Yes.

You're constantly asking yourself, am I doing the job right?

The training teaches you that you are doing it right.

There's a proper way of doing it.

But what works for one might not work for another.

Put your hand on here and push up for me, Olwen.

Un, dau, tri. Well done.

There are a lot of really good people out there

who want to do better, who really want to make life much more valuable

and give opportunity for people with dementia to achieve.

Jerry and Shirley are off to the Alzheimer's Society Centre

for their second visit of the week.

Today the activity is 'Singing for the Brain'.

You're in the house on your own with each other for many hours.

It's so nice to come out to sing and to chat to other people.

# Ba-ra-ba-ba-ba-ba-ba-ba

# Dooby-dooby-dooby-dooby-doo

# Hey Mr Miller

# What a swing that you bring to the band. #

Tutor Helen Vincent established the 'Singing for the Brain' sessions here two years ago,

the first in Wales.

'Singing for the Brain' is for people

in early or middle stages of dementia and their carers.

The idea is they come along with their carers

and they can forget about all their troubles that they're having at home

and they come and have an enjoyable hour singing with groups of other people.

# Did you ever see a... #

You need to be able to open your mouth and for a sound to come out.

It doesn't matter whether you're perfectly in tune,

it doesn't matter whether you have a good voice or not.

It's just about being in a room full of people singing

and being part of that.

# You are my sunshine

# My only sunshine

# You make my happy

# When skies are grey. #

I notice each and every one of the people who are sufferers

and I can see a difference in most people.

# Please don't take my sunshine... #

This is the little bit of magic that seems to happen with singing generally

and 'Singing for the Brain' specifically.

Even though these people have got dementia,

they are capable of learning new songs

and then remembering them from week to week.

We've had cases of people who've actually lost the ability to speak,

but they can still sing.

# You never know dear

# How much I love you. #

We feel that we are definitely having help.

We go religiously on a Wednesday.

# Please don't take my sunshine away. #

-There.

-I told you I loved you.

In her role as Scientific Advisor for Alzheimer's Research UK,

Julie Williams is on her way to Westminster

to address an important and influential audience

of movers and shakers in scientific research funding throughout the UK.

The Government has put more money into dementia

over the last few years,

but it's not into the research, into the causes, into the mechanisms

that lead to new therapies that can prevent the disease.

That's where we want the funding. That's what we're trying to highlight today.

It's where this funding needs to be directed to which is important.

The meeting coincides with a report that highlights

the lack of scientists working in Alzheimer's research,

and the aim is to encourage others to join the cause.

I've spent the last few years trying to persuade people

who have expertise in endocitosis, or expertise in immunity,

to come and work on Alzheimer's disease.

We know what we need to aim at now.

We just need to get bums on seats and we need to get more scientists working on these areas.

It's pretty simple.

We are pretty optimistic that maybe in ten years' time,

we will have therapies that result from this investment. Thank you.

APPLAUSE

These are small steps and you never know what will happen

but you just have to keep saying the same thing

and get your message over and eventually someone with the power to change things will do that.

MUSIC: "Andare" by Ludovico Einaudi

SHE SPEAKS WELSH

Another piece of the support jigsaw is befriending.

Care support worker Ann takes Jerry out once a week

giving his wife Shirley a welcome break from caring 24/7.

Been a befriender with Shirley and Jerry for about five months

and Shirley was offered it before that.

But she felt that she wanted to cope herself

so she didn't accept it

and then when eventually she realised that it was getting harder,

we went in as a befriender and now she realises that

she needed it before.

-My old golfing partner.

-You know him, do you?

-Yes.

-That's lovely.

-Known each other for years.

-Yeah?

-Yes, he's my old golfing partner.

-I know, it's OK, yeah.

-Do you remember?

-Yeah.

-Yeah?

-Yeah.

-There we are, my old mate.

Dementia doesn't mean that people can't do things that they used to do

when they were younger, when they were able to do it.

We try and get people out as much as we can and just get them back

to having a normal life as possible.

-Take care, mate.

-One, two three.

'I hope I'm like that when I'm 90.' SHE CHUCKLES

Here at the Norwegian Church in Cardiff Bay,

those who came together and became friends

at the Making A Difference sessions in Whitchurch,

still meet up each and every week.

The main object of this is to make this environment

as normal as possible.

So they go out, they can have lunch before they come in.

They come in, they'll sing, they'll dance,

whatever they want to go and do.

But you should not be able to tell in this room who has got the illness and who hasn't.

It's cohesive, it's supportive. It's...it's friendship.

Whilst we wait for the scientists to develop a cure,

one in three of us over the age of 65

will need this kind of crucial support,

to help us live well with dementia.

# Pack up your troubles in your old kit bag

# And smile, smile, smile. #

You can still have a life, yes,

and I think if they hadn't been here,

a lot of us would have...fallen by the wayside

more often than we do. You know?

# What's the use of worrying? #

'I'd have been in limbo, and been very frustrated. Whereas...'

I'm alive, and still love life and so does he.

# And smile, smile, smile. #

SHE STARTS SINGING # In Dublin's fair city

HE JOINS IN # Where the girls are so pretty,

# I first laid my eyes on sweet Molly Malone

# As she wheeled her wheelbarrow Through the streets broad and narrow

# Crying, "Cockles and mussels Alive, alive, oh." #

Subtitles by Red Bee Media Ltd