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Page 1: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

Newsletter Spring 2011

Newsletter Summer 2015

Inside

Join Dementia Research

New Creative Minds group

- arts and crafts for pleasure

Page 2: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

2

Editor’s Highlights

The proposed National Young

Onset Dementia Network

recognises that we all have so

much to learn from each other.

Every family living with young

onset dementia develops ways

of managing things, and it is

good to share those ideas.

I would encourage you to think

about helping with research, if

you feel you can. There is

increasing study, both of the

processes that cause

dementia and the best ways of

supporting those with it, and

people with young onset

dementia can help a lot.

Every person is an individual,

and that is not destroyed by

the illness. We all have similar

needs: to get out into the open

air, to smell the roses, to meet

friends and talk, to listen to

music, to dance. It becomes

more difficult when dementia

sets in, but the enjoyment from

them is just as intense. It can be

so difficult to take the first step -

to pick up the phone to a

stranger to ask for help; to go

to the first walk or Café. Home

can seem very safe. But it can

also be like a prison. YDUK tries

to make that first step easier.

On a personal note, my thesis is

finished - 245 pages, 56000

words and countless images of

brains with blobs showing

where the damage is. So now I

hope to have a little more time

to get out and about and see

you all.

Best wishes,

Helen Beaumont

Editor

Greetings all.

It's heartening to see so much local and national activity. Dementia

is getting more attention now than for many years and, while young

onset dementia has been less recognised, that is changing. I also

sense a shift from the gloomy messages of the past, and recognition

that people with dementia can have a good quality of life, if they

have the right support.

Page 3: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

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‘Words are very powerful - they

can build you up or put you

down. When you are speaking

about dementia

remember this.’ cautioned

Agnes Houston, person with

young onset Alzheimer's. We

have always tried to be

respectful in our language.

It is good to be mindful of

anything that might take us

away from what individuals

themselves find acceptable.

And talking of words, and

back to politics again, the

Dementia Vision 2020 detailed

hopes for better lives for

people with dementia and

their families. Every person,

whatever their age, should

receive ‘high quality,

compassionate care from

diagnosis through to end of

life’. The hope is for less

variation in support, with the

spread of high quality,

innovative services being

available to all. We ardently

hope those words become

reality and are

looking at ways of sharing

all that we know about

providing good young onset

dementia support.

Dementia Words Matter, a

DEEP Guide, written by people

with dementia. DEEP is the

Dementia Engagement and

Empowerment Project for

people with dementia.

Want to know more about

Dementia Words Matter?

Click here.

Tessa Gutteridge

Director

Direct Line

All too easy, especially at this time of political

change, to react to the latest calls for your

attention with a degree of scepticism. But my

last trip to London (well, not the one to Wembley

Stadium for the FA Cup semi-finals, the one before

that…) highlighted something we hold dear in

YoungDementia UK. I am talking about words, and

a recent Dementia Action Alliance event which

highlighted how much Dementia Words Matter.

YoungDementia UK raising

awareness at showings of Still Alice

Page 4: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

4

Young Onset Support

Making connections Family members who attend

our YoungDementia UK Coffee

& Chats and Walk & Talks as

well as meeting up at the YDUK

monthly Café tell us that

getting together with people in

a similar situation can make a

big difference. One person

said: ‘People can chat to each

other and get advice. It is not

just talking about dementia, it is

a social too.’ As another said:

‘It’s like a small, intimate

meeting pool.’ At each

opportunity, people share

knowledge and experience or

simply relax over a cuppa or a

gentle walk. If you would like to

meet others at Stadhampton

or Oxford or on one of the

walks, please contact Emeline

or Anna McNally.

Doing things that everyone

does - meeting friends, taking

the family out, having an

occasional treat - is what we

all like to share. Peter was

inspired to write a wonderful

review following a trip to the

theatre with Valerie and the

family. ‘The whole outing was

great fun and much

hilarity was enjoyed. Thank you

for organising the trip - we all

had a great time’.

Making the voices of

people with young onset

dementia even louder Earlier this year, Tony and Liz,

who are both living with

dementia, joined Mark Walsh,

One to One Coordinator, to

speak at the Oxford Health

Conference on Dementia.

They regaled the floor with

their experiences of living with

dementia which were both

funny and moving. The

attention in the room was total

- you could hear a pin drop.

Speaking to a room of over

100 professionals is not easy,

but Liz and Tony have both

offered to do it again. ‘If you

have another opportunity like

that, I’ll be the first to put my

hand up’ said Liz. Nic and Jen

also contributed to a

presentation on Turtle Song at

the Creative Dementia Arts

Network conference in April.

Anna Eden

Support Service Manager

Page 5: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

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Friends reunited Reviving old memories and

friendships brings great

pleasure to us all.

YoungDementia UK support

worker Simon arranged a

reunion recently for two of the

people he supports when he

discovered that Andy and

Dave both used to work for the

same company.

‘When I began seeing Andy he

told me that he used to work

for Grove Cranes, many years

ago. Then I remembered that

Dave also said that he'd

worked for them and so had

his friend Bill. So I chatted to

Andy’s wife Sarah about

helping them to all meet up.

She said two close neighbours

had also worked there so we

arranged a reunion for all of

them which Sarah very kindly

hosted at her house.

She laid on a lovely spread

and they all enjoyed seeing

each other again. The next

couple of hours flashed by in a

haze of happy memories and

lots of laughs. When it was time

to go they were all very keen

to meet up again when the

weather gets warmer and pub

gardens are available!’

Simon Warren

Support Worker

Feeling creative? We’ve recently launched a

new monthly arts and crafts

group called Creative Minds.

The front cover shows activities

at an early session. Based in

Abingdon and Deddington, it

offers a wide range of

activities designed to stimulate

and inspire.

Why not set up an arts and

crafts group where you live?

Page 6: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

Journalist Ben Lerwill joined a

recent YoungDementia UK

Walk & Talk and wrote about it

for The Great Outdoors, a

national walking magazine.

It’s a bright winter’s day, and

seventeen of us are walking

through the Oxfordshire

countryside. To all intents and

purposes, it’s the kind of short

but agreeable group walk that

might be encountered in any

part of the UK. Except it’s

rather more than that.

‘The outdoors diffuses things,’

a lady named Val is telling me.

‘That’s why a walk like this is

always such a good

opportunity to talk.’

‘It can be very isolating,’ says

Roger. His wife is now in a care

home but he still organises

these Walk & Talk sessions for

YDUK seven times a year. ‘You

can feel trapped at home, so

it’s hugely important to get out

and do things like this.’

I notice, more than I ever have

done, how fluid a group walk

is, with people splitting off into

twos and threes and then very

naturally reshuffling themselves

to start fresh conversations.

Walking leads to talking and I

also find it a salutary reminder

that a walk – any walk – is

primarily about appreciating

the moment.

Ben Lerwill

Journalist

Forthcoming Walk & Talk dates

and all of our other events are

on our website. Simply click on

the link to the events listing on

the web page http://

www.youngdementiauk.org/

yduk-events-oxfordshire

6

Family Support

Page 7: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

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Socials

Café Elvis wowed the crowd!

Phil Wilson (AKA Elvis)

entertained at the Café in April

– while he strutted his stuff, the

crowds danced and sang

along – nothing could stop

them! One couple who hadn’t

been to the Café before were

delighted. ‘We didn’t know

what to expect, but we will be

coming again’. Sue Smith will

be coordinating the Café now

and is keen to have your ideas

for how to make it even more

successful – why not come

along and let us know what

would work for you?

Garden Party This year’s Founders’ Garden

Party will be held on Friday

10 July, from midday until 3pm,

at Tubney Farm House.

Invitations to follow soon.

It’s always a wonderful event so

get the 2015 date in your diary!

Like Minds Witney Like Minds Witney launched at

The Fleece pub in March. The

group aims to give people living

with dementia an opportunity to

meet and socialise in a friendly

and informal way, to share

experiences and give feedback

on the services provided by

YDUK and others. There were

seven of us at the first meeting.

Conversations ranged from our

pets to what's on in Witney. We

meet on the second Friday of

the month from 10am until

midday. Hope you can join us!

Liz Maughn

One to One Support Worker

Like Minds groups also meet in

Oxford, Abingdon and Banbury.

YDUK Fun Choir Tuesday 16 June 10.30-12.30

Vine Cottage, Moreton, Thame OX9 2HX

All welcome – no experience needed

Range of musical styles

Trial session - may become monthly event

Refreshments available

For information contact Anna McNally

[email protected]

Page 8: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

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The release of the film ‘Still

Alice’ in March generated an

unprecedented increase in

publicity and awareness of

young onset dementia.

Television programmes,

newspapers and magazines

were all keen to feature

people with young onset

telling their personal stories.

It was inspirational to see so many people living with the condition

discussing what it is like to be diagnosed with dementia at a young

age and the realities of how it impacts on all aspects of life.

Wendy went to the premiere of Still Alice and was interviewed on

Channel 4 News and BBC2’s Victoria Derbyshire programme. She

said, ‘I am living with dementia as many others are – I just choose

to make public my experience – not for personal gain at all, but in

order to raise awareness. I don’t ‘enjoy’ these experiences, but I do

it in the hope that it can make a difference.’

Jacqui who featured in the Sun on Sunday’s magazine Fabulous

alongside her daughter Ruth said, ‘I think that the more each of us

can raise awareness about all forms of dementia the better. It is

hugely important. Those of us that can still communicate our

feelings and experiences help each other with ideas for daily living

for example. If I can share something, I feel it's important to do so

because people need to understand dementia.'

Alessandra told us, ‘I work with people with dementia and I believe

the film has helped people to have more understanding of the

experience and feelings of the person and of the family situation.’

Fingers crossed the media spotlight will continue to shine on people

whose lives are affected by young onset. We hope it leads to

greater understanding and awareness of the condition and more

age appropriate support to enable people to live life fully.

Kate Fallows

Communications Coordinator

The Still Alice effect

Page 9: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

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What the hell happened to

my brain?

Kate Swaffer was diagnosed with a form of young onset dementia

aged 49. In her soon to be released book 'What the hell happened

to my brain?' she offers all-too-rare first-hand insights into that

experience, calling for change in how we ensure a better quality

of life for people with dementia.

Kate describes vividly her

experiences of living with

dementia, exploring the

effects of memory difficulties,

loss of independence, leaving

long-term employment, the

impact on her teenage sons,

and the enormous impact of

the dementia diagnosis on her

sense of self. Writing it was a

challenging process, made

possible by doing it over time

and in small chunks. She says

her writing and dementia

advocacy work have taken

her on a process of self

discovery and enabled her to

develop a new and

meaningful personal identity.

Her powerful words will

challenge misconceptions

about dementia, and open

our eyes to new ways of

supporting people with the

diagnosis. Aimed at people

with dementia and their

families as well as for

professionals and carers.

Kate is attending the YDUK

garden party in Oxford on

10 July and is holding a

pre-release book launch in

London on 11 July, with friend

and colleague Dr Shibley

Rahman, the author of ‘Living

better with dementia’.

Kate’s book is available in the

UK on pre-order via Amazon or

in Australia at Footprint Books.

Kate will also be speaking at a YDUK

Afternoon Tea & Talk event in Oxford

on 9 July. Places are limited. For more

information please email

[email protected]

Page 10: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

10

Fundraising News

YoungDementia UK

fundraisers have been

pounding the streets

for the past few months.

Simon Eddison and

friend Chris took on a

chilly Half Marathon at

Silverstone and raised

over £560, whilst Mark

Cornell, escaped the

wind and rain for the

balmy Barcelona Marathon as part of Oakleaf Care’s Charity of the

Year partnership with YDUK.

Get active for YoungDementia UK If you want some extra fun whilst you’re running,

we’ve got places on the world’s most colourful

run. Run or Dye is a 5k event held near Oxford.

Run, walk or dance through the course as

you get showered in colourful dye at every

kilometre. Or, if you are you ready for something

a bit more serious, we also have places

available for the Oxford Half Marathon. Log on

to www.youngdementiauk.org/how-help-us for

more information. Or for help in finding a

running event near you please drop me a line.

Ready, steady…bake! If an apron appeals to you more than trainers could you host a

coffee morning or cake stall to raise money for YoungDementia UK

this summer? Hold it at home, at work, or anywhere you think

people might want to buy some cake! For some of our favourite

recipes, tips and more information go to

www.youngdementiauk.org/coffee-cake

If you’ve got fundraising news or ideas, or need a bit of help, please

get in touch at [email protected]

Page 11: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

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The Purple Angels raise £10,000 Purple Angels across the country supported us in 2014/15

with events ranging from sponsored walks to skydives, and

fashion shows to fetes. We were overwhelmed by the

energy they put into raising awareness and money for us,

so thank you all. And very special thanks to Norrms and

Elaine McNamara for all their support and hard work.

Helen Lerwill

Community Fundraiser

Did you know? What do the following have in common - Patricia Routledge, hi-fi

retailer Richer Sounds, the Savoy Hotel and Grand National winner

Maori Venture?

They all either have, or are associated with, charitable trusts that

have given grants to YoungDementia UK in the last three months.

Alex Taylor

Trust Fundraiser

Trustees Wanted for YoungDementia UK

Are you interested in playing a key role in steering our ambitious,

‘can do’ charity?

We are looking for new trustees with experience in the strategic

use of digital communications or information technology, or

innovative support, education and training provision – or do you

have in-depth knowledge of young onset dementia through

personal or professional experience?

Could you commit to the cause, and give time to learn and grow

in the role? It’s sometimes challenging, sometimes exciting,

always interesting to pursue together our goal of a better quality

of life for people with young onset dementia and their families.

Call Tessa to discuss 01993 776295

Page 12: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

I live in East Oxford with my

husband and two children,

Nathan and Lucy. I’ve had a

very full business career

working for a big electronics

company all over the world. In

connection with my work with

British companies in Japan I

was awarded the MBE. It was a

real honour to meet the Queen

and together with my family

we had a wonderful day.

In 2012, I decided to set up my

own consultancy. I really enjoy

talking with and learning from

different people and finding

ways to move forward

together. In 2014 I joined YDUK

as a trustee. I love being a part

of the team. My particular

interest is to help as we devise

and implement our plan

together to become a truly

national force.

Clare Ridley MBE

Trustee

12

Team Member Profiles

Clare & Paula

I joined YDUK as a One to

One support worker in

September 2014. It's been a

pleasure to work and build

relationships with you. So far

we've ventured out and

about, admired the

landscape, found common

ground, exchanged views,

laughed and found the best

coffee in town! We’ve

hatched plans, swapped

stories, and explored

museums together. This is

why I love my job.

My background is in the Arts

and my passion is using my

love of creative activity to

benefit individuals and

groups. I host YDUK’s new

Creative Minds group in

Deddington, near Banbury.

We are planning projects

that are diverse and

beautiful, simple and small

or grand and complex - do

come and join us!

Paula Taylor

Support Worker

Page 13: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

‘We want to get out and smell

the roses.’ This was said by a

family member at a recent

young onset dementia group

meeting at Kingston Hospital,

London. The point being, make

sure there are supports and

activities which feel right for

people who are in their 40s

and 50s.

Likewise. ‘The information we

were given didn’t mean

anything to us. It was written

for people a generation older

than me. We felt excluded.’

So here is where I continue

telling you about the

development of a national

Young Onset Dementia

Network which is beginning its

work on these very issues. We

have started with the steering

group of around 20 or so

people living with or working

with young onset dementia –

and having put our heads

above the parapet so to

speak, are already connecting

better and learning about

what each other are doing.

The ‘steerers’ will extend these

connections in the following

months as we prepare to

properly launch a fuller

network. We are planning

some short films to show young

onset and its issues; and an

event to encourage people

with young onset dementia to

have the confidence to shape

their services to their needs.

We have been invited to

contribute to a report on

clinical services and also to

an international project to

achieve a consensus on what

young onset dementia

services should be available

as standard.

I will keep you posted.

Tessa Gutteridge

Chair Network Steering Group

13

National Young Onset Dementia

13

Diary date University College London and the

Journal of Dementia Care are holding

a young onset dementia conference

at University College London on

Friday 20 November 2015.

More information to follow.

Page 14: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

Music makes your

cares float away Arts 4 Dementia, in

partnership with the

English Chamber

Orchestra (ECO) and

London College of Music

(LCM) recently ran a project

for people with young onset

dementia. The series of eight

orchestral workshops ran

through February and March,

culminating in a Symposium on

17 April, 2015. The aim was to

restore and enhance the

abilities of musicians to

overcome the challenges and

difficulties encountered when

living well with the early stages

of dementia.

I have been a musician and

played with both professional

and amateur bands for 50

years but I hadn’t played with

a string orchestra for 35 years.

I currently play Eb Tenor Horn.

I have frontotemporal

dementia which affects my

executive and sequential

functioning. Throughout the

course, members of the ECO

and LCM worked very hard to

help to find coping strategies

to deal with my diminishing

ability to get the musical notes

off the page in an assemblage

of the correct order.

I thoroughly enjoyed my

sessions with them and the mini

concert at the Symposium was

well received. If the project is

run again, I would encourage

everyone to get involved.

While you are playing,

whatever is happening in your

life takes second place and,

just like the notes, your cares

float away. Chris Norris

Is there someone in your

family with dementia? A new National Involvement

Network for Family Carers of

People with Dementia will be

hosted by the Life Story

Network with the support of

the Department of Health.

This follows the successful

Carers Call to Action

campaign – which raised the

profile and unique needs of

carers of people living with

dementia. For information see

www.lifestorynetwork.org

14

News & Views

Page 15: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

Gardening together Gardening has many

therapeutic benefits - fresh air,

gentle exercise and cognitive

stimulation too. What better

than watching the fruits of your

labour as plants grow and

flowers bloom over time?

There are lots of gardening

groups across the country

aimed at people who are living

with dementia. Gardening

charity Thrive runs projects in

Berkshire, London, Birmingham

and Gateshead and has a

database of around 900

garden projects so they can

put you in touch with one in

your local area.

In Oxfordshire, Thyme Together

is a new gardening group

designed for those in the early

stages of dementia. Held in

Witney every Friday from 10am

to 12noon the two hour sessions

include a tea / coffee break.

All you need to bring is sturdy

footwear and outdoor clothing.

To find out more about Thyme

Together, contact Sarah

[email protected]

or phone (on Mondays only)

01993 709430.

For information about Thrive,

visit their website http://

www.thrive.org.uk/

Respite for Carers 15

The Saga Respite for Carers

Trust provides holidays for

unpaid carers over the age of

50. To qualify you must have

been caring for someone for

more than a year and not

taken any significant holiday

away from your caring

responsibilities in the last

12 months.

You can nominate yourself, or

nominate someone you think

deserves it. Nominations close

on 31 August 2015.

Find out more

www.saga.co.uk/saga-

charitable-foundation/saga-

respite-for-carers-trust.aspx

Page 16: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

16

Research projects

A new national service that

empowers the public to take

part in vital dementia research

Join Dementia Research

promises to accelerate the

pace of dementia research by

allowing people - both with

and without dementia - to

register their interest in studies.

Dementia affects over 850,000

people in the UK, including

over 42,000 living with young

onset dementia. Given that

dementias that affect younger

people can be rare and

difficult to recognise, it is vital

that we give everyone the

opportunity to play a role in

changing the outlook for

people with dementia - now

and in the future.

Dr Rupert McShane, Clinical

Research Lead for Dementia in

Oxfordshire says: 'The history of

medicine tells us that progress

is often made by paying close

attention to rare events and

conditions. Quite apart from

the devastation that can be

wrought on patients and

families by young onset

dementia - which is profound

and needs addressing in its

own right - we all stand to gain

by increasing the pace of

research into these conditions:

insights here are very likely

to help us also manage

dementia in the elderly.'

You can sign up to Join

Dementia Research by visiting

the website and filling in the

online form at

www.joindementiaresearch.

nihr.ac.uk

or calling a member of the

team on 0300 222 1122.

By signing up to the service,

people give permission for

researchers to contact them

with details of studies in their

area that match their profile.

They can then decide, on a

case-by-case basis, if they

would like to participate in

those studies. Registering does

not commit anyone to take

part in any studies and they

can opt-out at any time.

Taking part in research may

involve:

• Trying a new medication

• Answering questions about

your memory problems and

day to day life

• Talking to carers about their

experiences

• Having a brain scan.

Page 17: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

17

Upcoming research project:

How people with young onset

dementia share their diagnosis

My name is Katherine Sui. I am

a trainee clinical psychologist

at Canterbury Christ Church

University. As part of my

training, I am researching how

people with young onset

dementia tell others about

their diagnosis.

When I started training last

year, I became curious about

how people 'broke the bad

news'. It led me to wonder

how people decide to share

their diagnosis with those

around them, and how it

might influence relationships.

I wanted to speak with people

who have had this kind of

experience, particularly those

who were living with young

onset dementia. This is how my

research project came about.

Our aim is to gain a better

understanding of peoples’

needs after the diagnostic

process. This may then help us

to develop recommendations

for services supporting younger

people in adjusting to changes

that dementia may bring.

The project has been

approved by the National

Research Ethics Service. If you,

or someone you know, is

interested in receiving further

information or in participating

in the project, please email me

[email protected]

Do you have young onset

dementia, or care for

someone who has?

Then you are invited to join an

exciting PhD research project.

It involves 10 weekly drama

and storytelling sessions and

three interviews, and you will

also be asked to photograph

your experiences.

Sessions will be held at the

University of Northampton from

October-December 2015 and

last for 2 hours, with time for

coffee and chat.

To find out more contact

Alison Ward at the University of

Northampton on 01604 893559 [email protected]

Page 18: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

18

Living with a learning

disability and dementia

Thanks to advances in

medicine and care, people

with learning disabilities can

expect to live longer than ever

before, although this isn’t

without associated risks. For

people with Down’s syndrome

the statistics are stark - 10-30%

of people aged 40-49 and

30-75% aged 60-69 are likely

to develop some form

of dementia.

The diagnostic process is

challenging as early symptoms

of dementia are often

dismissed because they are

masked by ‘behaviours’

associated with having a

learning disability, and many

services aren’t equipped to

support people with a learning

disability and dementia.

I am immensely proud to have

been working with learning

disability charity MacIntyre,

supporting the work of their

Dementia Special Interest

Group. The Group has

produced some free

resources, available on

their website.

I sense that in the years ahead

understanding will continue to

grow so that those with a

learning disability can aspire to

live well with any type of

dementia they may develop

in the future.

Beth Britton

www.bethbritton.com

For more about MacIntyre:

www.macintyrecharity.org/our

-work/dementia-special-

interest-group

Beth Britton with the MacIntyre Dementia Special Interest Group

Page 19: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

Don’t call us! Endless nuisance calls upset

and confused my husband,

Andy, so I looked into blocking

them. Quite by chance, our

phone went wrong and I had

to buy a new one. We opted

for a phone with bigger

numbers and the option to

block nuisance calls, overseas

numbers and other things too.

It wasn’t too expensive and will

probably work out cheaper

than the monthly fee the

phone companies charge to

block calls. The model we

bought was the BT Freestyle

750 Twin.

Sarah

19

And finally ...

19

Thank you A big thank you to our friends at

the Hinksey Heights Golf Club

who raised funds for us all year

for us and made over £6000.

As you can see from the photo,

that’s one pretty big cheque!

Walk in mam's memory Save the Memories began in 2014

from an idea I had wanted to develop

for ages. My Mam had young onset

Alzheimer’s. She died aged 64, when I

was 22, and this experience fuels my

passion to combat this cruel disease.

Save the Memories raises awareness and funds for projects that

support people living with dementia. In 2014 we raised over £6000

for the Alzheimer’s Society and we’re raising further funds this year.

Our 2015 Save the Memories Walk on Saturday 18 July follows the

lovely Northumberland Coastal Path for 14 miles from Craster to

Amble. There’s more on my Facebook page Save the Memories.

Gemma Little

Read Gemma’s story at https://www.youngdementiauk.org/

gemmas-story

Page 20: Newsletter - YoungDementia UK...great fun and much hilarity was enjoyed. Thank you for organising the trip - we all had a great time’. Making the voices of people with young onset

Contact Us

YoungDementia UK PO Box 315 Witney OX28 1ZN

[email protected] www.youngdementiauk.org

Registered Office 7 Mount Pleasant Crawley Road Witney OX28 1JE

YoungDementia UK Company No 4142850 Charity No 1085595

Could we send you this newsletter electronically? It saves us

money on postage and printing. If you’d like to try it online, or

want to notify any changes to our mailing list, please email

[email protected]

There are lots of ways to contact us - via email, Facebook, Twitter,

or of course you can get in touch by phone or post

To email any member of the YDUK team listed below, please use

the following format [email protected]

Contact phone numbers for some of the team are listed below

and the postal address of the registered office is at the bottom of

the page.

Fundraising

(Community)

Helen Lerwill

07479 940847

(Trusts)

Alex Taylor

07730 301165

Socials

Sue Smith

07964 677421

Newsletter

Sharman Oldham

01865 390842

Director

Tessa Gutteridge

01993 776295

Finance

Karen Warner

01865 861907

Admin

Joan Dutton

01235 531973

Communications

Kate Fallows

07748 304207

Support Service

Manager

Anna Eden

01865 794311

One to One Support

Mandy Blair

07958 721324

Mark Walsh

07956 693218

Family Support

Emeline Keown

07909 060430

Anna McNally

07852 703271

Next Newsletter - copy deadline for the next edition of the newsletter is

Wednesday 26 August. Please send items to Sharman Oldham or pass

them on via any member of the YDUK team.