Young Dementia Network

to launch at conference

in September Sarah Plummer, National

Development Manager at

YoungDementia UK will share

the exciting news of the

launch of our new Network for

people affected by, or with

professional experience of,

young onset dementia. The

Network will be launched on 27

September at our conference

being held in association with

the Journal of Dementia Care.

Oxfordshire News Issue 3/2016

Doing Dementia Differently Following Stockport-based EDUCATE’s

spring visit to YoungDementia UK in Oxford,

eight of us paid them a return visit in June.

First stop was a young onset dementia

workshop. Each person with dementia shared what helps them live

well and their wish list for anyone else with the condition. Everyone

felt staying active and involved was vital.

Later, at the Stockport Plaza, we enjoyed a memorable evening of

music, poetry, film and theatre, mainly performed by people with

dementia. Jacqui read her poems to rapturous applause from the

500+ audience!

We spent mealtimes, breaks and travel-time deep in talks about

what enables people with young onset dementia to live a full life –

and came home with ideas and plans aplenty.

The Network is being created

to influence, educate and

connect people in order to

improve the lives of people

affected by young onset.

To find out more or to sign up,

please visit our website

www.youngdementiauk.org/

young-dementia-network

2

Holidays to Float

Your Boat

My husband Martin

and I had always travelled a

lot, even after his diagnosis

with frontotemporal dementia

in 2012. But though I still

enjoyed it, I was very aware of

the stress such trips put on me.

I found Dementia Adventure

(DA) online and we signed up

for a sailing break.

After booking, I was anxious

whether Martin would enjoy it,

how would we manage his

sometimes difficult behaviour

in close proximity to others,

was it safe etc, etc.

But I needn’t have worried. As

well as four people living with

dementia and accompanying

friends / family members, there

were four staff from DA, plus

the captain and two crew - all

there to support us.

Martin visibly enjoyed the fresh

air, scenery and sociability of

our five days aboard.

Challenges arose but help was

always at hand, along with lots

of laughter. It was a lovely

holiday, helped by glorious

weather so I’ll always be glad

that I didn't cancel. Sailing a

London barge along the Essex

coast was brilliant - the

experience of a lifetime!

Janet Green

For info about Dementia Adventure - www.dementiaadventure.co.uk

I joined the boat ‘Provident’

in Portsmouth and we sailed

to the Isle of Wight in the

evening, after a lovely meal.

Next day, the Skipper

explained our route and

warned us of challenging

conditions ahead! We then

set off past the Needles for

the open sea.

As the waves grew higher I

felt increasingly queasy and

wished I hadn’t enjoyed such

a hearty breakfast! We were

deluged by a huge wave.

Feeling sick and cold, I was

not at my best but, buoyed

by borrowed warm, dry

clothes and my fellow sailors I

got through it.

I enjoyed taking the wheel on

the final afternoon, and felt

honoured next morning when

the Skipper asked me to take

the boat the last few miles

right into Brixham harbour. It

rounded off an enjoyable trip.

Peter Hill

3

Getting together

Founders’

Garden Party Almost 100 people

attended this year

and Millway Barn,

Appleton proved

a lovely venue.

Despite breezy, overcast

weather we all had a

super time. The buffet

table groaned under all

the delicious bring and

share food and the music

played by Fiddlebop was

just perfect for the

occasion! Special

thanks to all who

helped out. The

pictures speak

for themselves! Sue Smith Socials Coordinator

The Supper Club ‘There are no strangers here,

only friends you haven't yet

met’ - a famous quote which

fits the Supper Club perfectly!

There is something for

everyone. Time to catch up

with friends is important so the

first hour is always quieter

before the main entertainment

starts. Recent themes have

included summer holidays and

the1960s but, theme or no

theme, every Supper Club

aims to offer tasty food, good

company and great music!

Supper Club regulars, Mick

and Angie Way, share what it

means to them.

‘What are we going to wear?

Getting ready for a meal, a

little dancing and talking to

our friends. It's down to the

Supper Club at Cassington.

The entertainment could be

anything from Elvis to Hawaiian

themed. We eat our meal to a

bit of background music then

go and have a boogie on the

dance floor. We chat, laugh

and dance all at once. Can't

wait ‘til the next one!’

Do join Mick, Angie and the

rest of us at 7.30pm on the

fourth Thursday of the month

at Cassington Village Hall.

Save the Date ... Christmas Party! Thursday 8 December,

7.30-10pm, at Cassington Village Hall. Invitations and details will come later

but for now, make sure it is in your diary!

4

Out & About

Take part in our new film Last year we created a short

film ‘Make A Point About

Young Onset Dementia’ which

gave you an opportunity to

have your say about young

onset dementia and how it

affects your life. It was really

well received so this year we’re

looking to create a follow up.

This time we want to produce a

film that shows the value of

having support. This support

may come from anyone -

family members, friends or

professionals. We want it to be

really positive and show lots of

different examples of the

exciting and interesting things

you do and the benefits being

well supported brings.

If you’d like to get involved in

the film, you can record a short

video clip on a electronic

device and email it to us.

Or you can send us a photo

and a few lines of text, stating

what special things you enjoy

doing with the support of others

and we’ll edit it all together.

To find out more about the film

and how to get involved,

please email Kate Fallows,

Communications Coordinator

Lavender for Liz Liz Woods had often said she

would love to visit a lavender

farm so YDUK’s Liz Greenlaw

set up a trip to Jacob’s Field

Lavender Farm at Islip, near

Oxford. Liz G continues ...

‘Jacob's Field is a community

run enterprise, using land

given by a local landowner.

Volunteers plant, weed and

harvest the lavender, and

distil the oil on site. External

producers use it in beautiful

products, which are sold in

aid of local good causes,

including Vale House.

A lovely lady called Julie

welcomed us, showed us

round and took care of Liz,

who is registered blind and

has PCA. It was a scorching

hot day but there was

nowhere better to be than in

a field of lavender with bees

buzzing and the lovely smell

around us.’

Where have you been Out &

About to lately? Let us know! katefallows@youngdementiauk.org

13 5

Planning Your Future

Legal & Financial

Workshop Pathways Through Dementia

offer free legal and financial

information to those living with

dementia and their families. So

we were delighted when

Sara Wilcox from Pathways

came to Oxford to run a

workshop for us in July.

Sara asked about issues that

particularly affect people with

young onset dementia and

talked about leaving work,

redundancy, planning ahead

and support for care. Key

points from the session include

See a financial adviser as

soon as you can to identify

your options in terms of

mortgages/Wills/future plans,

especially if you have young

children. Some financial

advisers will charge, others

may give a free initial session.

Complete a Lasting Power of

Attorney for finance and

health while you are able

and consider who can act on

your behalf if you are unable

to do so. There is no need to

pay to register it until you

need to – and people on

benefits don’t have to pay.

Complete an Advance

Decision which will guide your

family and lawyer on your

wishes around future health

and welfare decisions.

Make a Will, so that your

wishes can be made known.

And finally, contact Pathways

Through Dementia with any

specific concerns / issues.

Sara will also be speaking at

YoungDementia UK’s joint

conference in September. We

hope to use her presentation

to create a resource for

people affected by young

onset dementia.

Members’ Tips We are planning a new regular

newsletter spot featuring your

tips on any aspect of making

life with young onset dementia

easier. We’ve already had

some great ideas from our Like

Minds Plus group, now called

PACE, which we’ll share with

you next time. Email your tips to

web@youngdementiauk.org

www.pathwaysthroughdementia.org

6

Fundraising

It’s been a busy summer for

fundraising. First there was a

hugely successful Film Night

organised by Eynsham Rotary

Club who were supporting us

for the second year running,

and raised £715.

Next up, two intrepid

cyclists, nephews of YDUK

Trustee Janet, set off on a

mammoth cycle ride from

London to Paris, amassing

nearly £3500 for us and Charlie

Platts raised £1500 by running

the London Marathon. Our

thanks to them all for taking on

such energetic challenges!

Lesley and Mary did a great

job running this year's

Cake Sale in

Summertown

which raised

£280. Thank

you so much

to everyone

who made or

bought cakes,

or helped on

the stall.

In July Sarah’s house became

a hub of hard work and a

depot for the various stalls that

she organised for the Muddy

Waters Family Fun Day. We

were overwhelmed by your

donations for the raffle, bottle

tombola and cake sale –

thank you!

We were lucky to enjoy a really

beautiful sunny day and even

the rain late on didn’t dampen

our spirits, as the event raised

over £1,500!

Thanks to all our amazing

volunteers – Rebecca, Sue,

Emily, John, Nick, Jacqui,

Paula, Charlotte

and Paul for their

help on the day.

And a mega big

thank you to Sarah

whose ideas, energy

and enthusiasm

made it such a

success!

7

In August, Martin Keown,

ex-Arsenal and England

footballer (and YDUK’s

Emeline’s brother-in-law!)

gave a football loving

audience of over 120 people

the low down on his club and

international career, his views

on Euro 2016 and the

upcoming football season.

The evening was a big

success, raising over £2,100!

Huge thanks to Martin for so

generously giving his time.

Coffee & Cake Our Coffee & Cake appeal

raised over £2,000 in 2015.

This October it’s back again

and we want you to help us

raise even more ‘dough’!

Last year, cake sales were

organised up and down

the country - keen bakers

held sales at home, at work,

with their young onset groups,

at church and even in a

hospital! Could you run one

for us this October? It can be

as large or small as you want

and held anywhere you think

someone will buy a cake and

a cuppa - or several!

helenlerwill@youngdementiauk.org

Just as we were

going to press the

Co-op gave us a

lovely surprise of a

cheque for over

£1,300, collected from plastic

carrier bag sales in the

Kidlington and north-west

Oxford stores.

And finally, we’re starting to

plan our Dementia Friendly

Festive Christmas concert on

3 December, to raise money

for YoungDementia UK and

Daybreak. Please come along

with your friends and family.

Tickets are available from

www.youngdementiauk.org/

festive-concert

If you’d like to fundraise for us

contact Helen

October’s the month

for Coffee & Cake!

And finally ...

YoungDementia UK PO Box 315 Witney OX28 1ZN

01993 776295 www.youngdementiauk.org mail@youngdementiauk.org

Registered Office 7 Mount Pleasant Crawley Road Witney OX28 1JE

YoungDementia UK Company No 4142850 Charity No 1085595

Contact us There are lots of ways to contact us—via email, Facebook, Twitter, or by

phone or post. To email any member of the YoungDementia UK team,

please use the format firstnamesurname@youngdementiauk.org

Some useful contacts are

Support Service Manager

Anna Eden

01865 794311

Communications

Kate Fallows

07748 304207

Community Fundraiser

Helen Lerwill

07479 940847

Support Coordinator

Mandy Blair

07958 721324

Young Onset Dementia Adviser

Emeline Keown

07909 060430

Culture Corner Two Moving Music concerts will be held on Thursday 6 October at 11.30am

& 2.00pm in the Jacqueline du Pre Music Building, Oxford, OX4 1DY.

Reservations 01865 286660. £5, carers free. Refreshments ½hr beforehand.

Chipping Norton Theatre’s Christmas pantomime ‘Robinson Crusoe’ runs

from 15 November to 8 January, with a ‘Relaxed Performance’, suitable for

those with dementia, at 2pm on 8 December. Bookings 01608 642350.

The ‘Kicking the Bucket’ Festival in Oxford will include a reading of young

onset dementia play, ‘Don’t Leave Me Now’

on 5 November. Further details to follow soon.

Goodbye & Good Luck! Sadly, we’re saying farewell to Anna McNally,

Young Onset Dementia Adviser, who has

been such an asset to our team and to the

families and friends she supported. Wishing

you the very best of luck in your new job!